News

The position of the fibromyalgia patient in society : Posted on 14 Apr 2017

 “The position of the fibromyalgia patient in society”

 

Report of European Parliament event April 12th 2017 Hosted by MEP Takis Hadjigeorgiou.

 

Because of obligations elsewhere the MEP wasn’t able to attend in person but…

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European Commission publication on "What you need to know about biosimilar medicines" : Posted on 20 Feb 2017

European Commission has published 6 new language versions of the patient information document "What you need to know about biosimilar medicines", so that patients now have access to unbiased and reliable information in English, French, German, Italian, Polish, Portuguese and Spanish. The information document can be downloaded and printed here: Commission publishes Q&A on biosimilar medicines for patients.

More information on activities related to biosimilars can be found on the…

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How to Get the Most of Your Doctor's Appointment : Posted on 10 Dec 2016

Two members of ENFA have attended European League Against Rheumatism (EULAR) patient conference in Sofia, Bulgaria. Patients from all European countries representing any of the 200 musculoskeletal conditions, from arthritis, fibromyalgia to back conditions were working over 4 days with researchers and healthcare professionals and sharing best practice. 

ENFA’s representatives said: ‘’It was very empowering seeing patients from all over Europe working in the same direction – to improve healthcare outcomes for people in their countries.…

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How to Get the Most of Your Doctor's Appointment : Posted on 10 Dec 2016

ENFA’s representatives said: ‘’It was very empowering seeing patients from all over Europe working in the same direction – to improve healthcare outcomes for people in their countries. The theme of the event was on patients taking control over their care. It means patients’ being informed, active and working together with their doctors in the management of their conditions. This working together with the doctors is called by the medical profession shared-decision making. It means that the…

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EULAR WAD Conference “Reducing the burden of chronic diseases in the workplace” : Posted on 02 Nov 2016

On October 12, 2016, the World Arthritis Day, EULAR organised its annual conference in Brussels.

For more details on this event, please check the report, kindly prepared and shared by Agora representative, Mrs. Elena Tsingi.

To read full report click here

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New EULAR recommendations on Fibromyalgia complete : Posted on 29 Jun 2016

New guidelines for the management of fibromyalgia presented at the EULAR Congress, London June 9 2016. After a period of 10 years working according the same guidelines EULAR decided to update these guidelines as more research and data is available to support the new guidelines.

The guidelines are bases on the following principles.

Optimal management requires prompt diagnosis

Full understanding of fibromyalgia requires comprehensive assessment of pain, function and psychosocial context.

Read more >>

New EULAR recommendations on Fibromyalgia : Posted on 13 Jun 2016

During the EULAR congress held in London from 8 till 11th of June 2016 Professor Gary Mac-Farlane presented the new recommendations on Fibromyalgia.

These recommendations were formulated by a team where patients also were involved. One of the team members was Souzi Makri, President of ENFA

More news on the recommendations…

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The Patient Empowerment Campaign - One Year After : Posted on 12 Jun 2016

The Patient Empowerment Campaign is only a continuation of European Patients’ Forum’s (EPF) struggle to help patients get more control over their life, and promote understanding of patient empowerment. It is also a call for action not only among patients and health professionals, but among all stakeholders – European and local policy makers, NGOs, Civil Society Organizations, etc. The Campaign was launched in May 2015, at the conference organized after the joint initiative of the Read more >>

ENFA General Assembly May 22 : Posted on 22 May 2016

ENFA's General Assembly was held in the Thon Hotel on May 22.

representatives of different national associations were present to discuss the activities done and about activities to undertake in the future.

This General Assembly was a day before the two day Symposium of SIP, the Societal Impact of Pain meeting. Almost all the members who where at the General Assembly were also involved with this symposium. Before the start of the actual symposium the m,embers also…

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ENFA General Assembly : Posted on 25 Apr 2016

ENFA's General assembly will be held at the Thon EU Hotel Rue de la Roi/ Wetstraat 75, Brussels, Belgium on May 22.


The meeting will start at 14.30 and will discuss the future of ENFA and have an overview of the past activities.

For the full agenda see the activities announcements on the left hand side.

After this meeting the participants will be active in the…

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Seasons Greetings 2015 : Posted on 22 Dec 2015

The Board of European Network of Fibromyalgia Associations wishes you a peaceful and merry Christmas.

                                                

 

And a very good start of the year 2016

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Award Winning Pam Stewart : Posted on 30 Oct 2015

Award winning PAM STEWART

Fibromyalgia Action UK (FMA UK) has a pleasure to announce that Pam Stewart, Trustee and a former long-standing Chair of the charity has received an international Distinguished Services Award from the Bone and Joint Decade, a Global Alliance for Musculoskeletal Health. This is an international Alliance of organisations working in the musculoskeletal conditions field. For…

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EPF Patient Empowerment Video : Posted on 22 Oct 2015

 

 

 

The Patient Empowerment Campaign video is out! 

Patient empowerment means something different for every patient and for our campaign video we have asked some of them to share their views with us. 

Watch them explain why we need to act now for patient…

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Thank You PAM : Posted on 20 Aug 2015

 

Dear Reader,

 

Due to a change in personal circumstances, our president Pam Stewart is forced to leave the ENFA board. Although she has not been president of ENFA for long, she was involved in the board from May 2008 as Secretary and Vice-president and at a later stage as President.

 

In this role, she had a big influence in developing ENFA and made sure our…

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EPF empowerment report : Posted on 27 May 2015

During  the EPF (European Patient Forum) conference on Patient Empowerment this campaign was launched. It is part of the Strategic Plan of EPF 2014-2020.

 

Goal 4: Patient Empowerment

To promote the development and implementation of policies, strategies and healthcare services that empower patients to be involved in the decision-making and management of their condition according…

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Activities organized for the 12th of May Awareness day : Posted on 27 May 2015

Activities organized for the 12thof May Awareness day 2015

 

   CYPRUS

 

On the 12th of May 2015, the Fibromyalgia group of CYPLAR  organized a workshop under the  title "Colour and Light in our Life".  The workshop was led by Ms. Elena Hadjigeorgiou , Life coach and NLP trainer.

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PRAC recommends updating advice on use of high-dose ibuprofen : Posted on 11 May 2015

 

PRAC recommends updating advice on use of high-dose ibuprofen

Review confirms small increased cardiovascular risk with daily doses at or above 2,400 mg

European Medicines Agency’s (EMA's) Pharmacovigilance Risk Assessment Committee (PRAC) has completed a review confirming a small increase in the risk of cardiovascular problems, such as heart attacks and strokes, in patients taking high doses of ibuprofen (at or above…

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12th of may activities : Posted on 05 May 2015


  We recieved the following information on the 12th of May activities.

If you are aware of more please send a mail to contact@enfa-europe.eu

 

Cyprus:

For the fibromyalgia awareness day , May 12th 2015, the Cyprus LeagueRead more >>

PARE conference Dublin 2015 : Posted on 04 May 2015

The 18thEULAR ANNUAL CONFERENCE OF PARE, was held at the Grand Hotel Malahide in Dublin, Ireland, from the 24th-26thApril.  ENFA was represented by two delegates, Ms Souzi Makri Vice President and Ms Lizi Schupack member of the board.

The general theme was ‘’Patient Centred Care –Taking Control’’.  After the opening by Mr. Marios Read more >>

Short report on the General Assembly ENFA March 23 2015 : Posted on 30 Mar 2015

Short report on the General Assembly ENFA March 23 2015 

 

At 10:00am, the President of ENFA opened the General Assembly by welcoming everyone, especially Ella Vine who is helping Read more >>

Collecting information for Fibromyalgia International Awareness Day 12th May 2015 : Posted on 18 Mar 2015

Collecting information for Fibromyalgia international Awareness Day 12th May 2015

Start Survey

ENFA has produced a survey to discover how fibromyalgia is treated throughout Europe. This will enable us to give evidence to the decision makers about any differences, expenses incurred and the widespread nature of the condition.

To do this we need as many people from as many different countries in Europe as possible. It will not be affective…

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Edgar Stene Prize 2015 : Posted on 18 Mar 2015

Edgar Stene Prize 2015

“Although Charlotte’s essay concerns rheumatoid arthritis it could just have easily been a diagnosis of fibromyalgia she was writing about.  Many people with FM will relate to her experiences.  ENFA, along with others is determined that professionals will all understand and their patients will feel all the better for their understanding.”

want to read more on this go to the following pages.

read the Read more >>

New EU Data Protection Regulation - EULAR request for urgent action : Posted on 18 Mar 2015

New EU Data Protection Regulation - EULAR request for urgent action.

Dear EULAR Liaison Officers and colleagues,
We are writing to you to ask for your support in a social media campaign aimed at preventing the potential damages that the new EU Data Protection Regulation may have on medical research in Europe.

Read more >>

explanation survey : Posted on 11 Mar 2015

Survey change and explanation of costing question.

 

As a result of comments received form people completing the survey, we have changed the pricing question so that a 0 answer can be given.  We are only expecting people to show what they have actually paid for any of the treatments not what it might cost.  This is to show any inequality across Europe where some treatment might be funded through the health scheme in one country and…

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Brain Mind and Pain interest group : Posted on 11 Mar 2015

Brain Mind and Pain MEP interest group

On the 24th of February the MEP interest group on Brain, Mind and Pain was launched during a very well visited event.

To see he video follow this link.

To see al the pictures of the event or the promotional event in Strasburg go to the website of PAE.

You can find…

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10th anniversery Društvo za fibromialgijo : Posted on 02 Jun 2014

10th anniversery Društvo za fibromialgijo 

The Slovenian association of Fibromyalgia celebrated its 10thyear  anniversary  Saturday 24th  May 2014 at the Wellness Spa Hotel   Lãsko  .

ENFA was represented by its President Mr. Robert Boelhouwer and Mrs. Souzi Makri  member of the Board .

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12th of May Fibromyalgia awareness day : Posted on 08 May 2014

On the 12th of May it is Fibromyalgia awareness day. In several European countries activities are scheduled.

Go to the participants website's and check if your country is doing something specific.

All activities or reports of activities may be placed on this website.

 

Read more >>

The Cross Border Healthcare (CBHC) conference : Posted on 16 Apr 2014

The Cross Border Healthcare (CBHC) conference

The Cross Border Healthcare (CBHC) conference was organized in Athens, Greece on the 7-9 April 2014. Representatives from Italy, Greece, Malta and Cyprus were invited to participate. The topic of the conference was the EUDirective 2011/24/EU on the application of patients’ rights in cross-border healthcare.

The Conference was opened by a statement from the Greek Minister of Health, Adonis Read more >>

MULTI-STAKEHOLDER VIEWS ON CHRONIC PAIN PRESENTED IN THE EUROPEAN PARLIAMENT : Posted on 16 Apr 2014

MULTI-STAKEHOLDER VIEWS ON CHRONIC PAIN PRESENTED IN THE EUROPEAN PARLIAMENT/ CALL TO ACTION TO FIGHT CHRONIC PAIN

Brussels, April 10, 2014. On the occasion of an exhibition and cocktail reception hosted by Petru Luhan, Member of the European Parliament and winner of the MEP award for Health 2013, a multi-stakeholder platform of patient organizations, academia and industry, called on EU institutions and national authorities to recognize the societal and…

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Chronic pain video : Posted on 16 Apr 2014

Chronic pain video

Click on the image to see the promotional video of the Pain Patient Pathway Recommendations project, which will be presented on the stage of eyeforpharma Barcelona, since the project is  between the 5 finalists of the “Customer innovator” award:  Unfortunately we didn't…

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PETITION ON CHRONIC PAIN IN EUROPE – SIGN NOW : Posted on 13 Jan 2014

Today Pain Alliance Europe has placed a petition on line in order to improve the situation for all the chronic pain patients in Europe.

Please sign this petition and let us make a difference..

PETITION ON CHRONIC PAIN IN EUROPE – SIGN NOW

Board ENFA

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Seasons Greetings 2013 : Posted on 17 Dec 2013

                                         

 All the people actively involved with ENFA wishing everyone

 Merry Christmas and a Happy NewYear 

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Bio-Modeling Systems and Aepodia sign a strategic R&D collaboration to decipher the Fibromyalgia : Posted on 05 Dec 2013

Bio-Modeling Systems and Aepodia sign a strategic R&D collaboration to decipher the Fibromyalgia & chronic facial pain mechanisms to bring novel therapeutic strategies faster to patients.

Ww With this promising text we received this press release. Although in an early stage they reach to develop new frameworks which can lead to better therapies.

 

For…

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Young people report worse fibromyalgia than older patients, Mayo Clinic study shows : Posted on 28 Oct 2013

 

Young people report worse fibromyalgia than older patients, Mayo Clinic study shows

Posted on October 26, 2013 by Stone Heart News

SAN DIEGO — It may seem counterintuitive, but young and middle-aged fibromyalgia patients report worse symptoms and poorer quality of life than older patients, a Mayo Clinic study shows. Fibromyalgia most often strikes women. It is characterized by widespread musculoskeletal pain with fatigue, sleep, memory and mood issues. The research, one of several Mayo…

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Fibromyalgia sufferers get significant : Posted on 21 Oct 2013

Fibromyalgia sufferers get significant pain relief from IV lidocaine

Posted on October 13, 2013 by Stone Hearth News

 

 Newswise — SAN FRANCISCO – October 13, 2013 –

Patients with fibromyalgia resistant to more routine therapies have a new pain relief treatment available, according to a study presented at the ANESTHESIOLOGY 2013 annual meeting. Intravenous (IV) lidocaine infusion provided significant pain relief to fibromyalgia patients, although…

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MEP awards : Posted on 15 Jul 2013

MEP's award ceremony

 

Tuesday 25 June 2013 the annual presentation of the MEP awards took place at the Concert Noble, Rue d'Arlon 82, Brussels Belgium. Just as last year ENFA supported the Justice and Civil Liberties award.

 

Robert Boelhouwer presented the award to…

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Fibromyalgia Is Not All In Your Head : Posted on 26 Jun 2013

 

With this heading the Fibromyalgia world was surprised by the findings of the researchers. What they established was at least that it is not imaginary after all, as some doctors have believed for long.

The researchers had the objective: "to determine if peripheral neuropathology exists among the innervation of cutaneous arterioles and Read more >>

SIP Focus Groups : Posted on 06 Mar 2013

Today we received the press release about the SIP Focus Group meetings taking place on May 14 / 15 this year in Brussels. ENFA representatives will be present during this event and interesting outcomes will be reported to you. More information about this event can be found on the website; : http://www.sip-platform.eu/sip-2013.html  

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Written Question in EP about fibromyalgia : Posted on 01 Mar 2013

We were informed by our Spanish member that Member of the European Parliament Antolín Sánchez  Presedo (S&D) has asked a written question about the progress with regard to fibromyalgia. The question was given to the European Commission on January 29th 2013 according rule 117 of the European parliament. The question is a follow up on the written declaration on fibromyalgia 69/2008. Our Spanish colleagues worked very hard to get the Read more >>

New members : Posted on 31 Jan 2013

Today we may announce to you that ENFA has two new members but also lost one.

The Israeli association ASAF has resigned. However we have another Israeli association who will join us as from today.This association is called Roots for Generations.

Further we are happy that the Norwegian fibromyalgia has joined us.

As from today we have 16 members from 14 different countries

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Happy New Year : Posted on 03 Jan 2013

HAPPY NEW YEAR

 

In most of the New Years speeches we look back at the past year and give a preview of the future.

In 2012 we had a fruitful year with all the efforts and means we had.

For this year we hope to welcome more members and to get more publicity by participating in a number of projects.   

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Newest member : Posted on 02 Jan 2013

Today we would like to welcome our newest member: ARTHRITIS FOUNDATION OF CRETE. AFC We are reaching the point in which the majority of the EU countries are involved within ENFA. This is of great importance for ENFA and for the fibromyalgia patients across Europe.

Welcome AFC and we will work together in improving the quality of life of…

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Autum Conference PARE : Posted on 23 Dec 2012

 

The 15thEULAR Autumn Conference for PARE 2012 took place in Zurich Switzerland from 2-4 November 2012.  The theme this year, the same as last , was ‘move to improve‘, focusing not necessarily  on traditional exercise but  also on the benefits of physical activity in general.

There were presentations on the activities and projects of PARE on Friday and a visit to the EULAR HOUSE.   Workshops followed that included the 2020 Horizon, World Arthritis Day,…

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Season greetings : Posted on 23 Dec 2012

We would like to wish the visitors of this website Merry Christmas and a Happy New Year.

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Mep award ceremony 2012 : Posted on 14 Oct 2012

On September 25 the presentation of the MEP Awards,  hosted by Maros Sefcovic, European Commission vice-president for Interinstitutional Relations and Administration, took place in Brussels.

The originator of the awards is the Parliament Magazine, a magazine with the latest  European news,  politics, analysis and comment  from the European Parliament and EU institutions from the  Parliament. The magazine is distributed to all MEP’s. In order to give…

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Restricting use of tolperisone medicines : Posted on 24 Jun 2012

European Medicines Agency recommends restricting use of tolperisone medicines

Benefit-risk profile for oral tolperisone considered positive only for adults with post-stroke spasticity and negative for injectable tolperisone

The European Medicines Agency has recommended restricting the use of tolperisone, a muscle relaxant authorised to treat a variety of different conditions, including spasticity due…

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News on Sodium Oxybate Therapy : Posted on 13 Jun 2012

 In the Annals of the Rheumatic Diseases June 2012 volume 71 issue 6, we found this article about the results of an international phase 3 trial on a sodium oxybate therapy.

The conclusion of this trial is as follows: “These results, combined with findings from previous phase 2 and 3 studies, provide supportive evidence that SXB therapy affords important benefits across multiple…

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Report annual meeting CYPLAR annual congress : Posted on 03 Jun 2012


The annual conference of the Cyprus League Against Rheumatism was held in Nicosia, Cyprus on the 19th of May, with great success.

The general topic of the conference was “Effective management of chronic pain/ practical ways of treating the pain of Fibromyalgia”. The programme included presentations by a rheumatologist, a personal experience by a patient with Fibromyalgia, a physiatrist, and…

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Report SIP meeting Copenhagen : Posted on 03 Jun 2012

The 3rd symposium on the „Societal Impact of Pain” is now over.  We hope you all had either the chance to enjoy the conference or to watch the live web stream from home!

Please find attached the final SIP 2012 press release (Click HereRead more >>

Member achievement : Posted on 17 Apr 2012


                                                                                                                                                                                                                     

 
                                              

Today we received this news from our Spanish member. Maybe this could work as a motivation for you all.

 

“Dear colleagues and friends,

We would like to share with you that our association has been chosen to represent…

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Launch website PAE : Posted on 26 Mar 2012

Today we received the following media alert.

 

                                                                                                

 

MEDIA ALERT

 

Official website launch of Pain Alliance Europe (PAE)

Pan-European alliance for chronic pain patients presents new website in EU Parliament

 

Brussles, 23 March, 2012.…

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SIP 2012 Copenhagen : Posted on 12 Mar 2012

             SIP symposium may 30 & 31 Copenhagen             

ENFA representatives will take part on the SIP symposium may 30 and 31 In Copenhagen. SIP stands for Societal Impact of Pain. As fibromyalgia is known for its pain it is logic that ENFA would join these activities. After the symposium you find a report of the ENFA  delegate her on the website.…

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PAE general assembly : Posted on 12 Mar 2012

                PAE general assembly              

PAE general assembly is scheduled for May 29 2012 in Copenhagen. PAE stands for Pain Alliance Europe. As ENFA is a founding member of PAE they will be present at this meeting. A report of the delegate will be available shortly after the meeting. 

Read more >>

EULAR general report autum meeting : Posted on 03 Jan 2012

 

Delegate feedback from the 14th EULAR Autumn Conference for People with Arthritis/Rheumatism in Europe (PARE), Athens, Greece 24-27 November 2011 “Move to Improve” by Lorna Taylor

As a physiotherapist and Trustee of BackCare – the charity for healthier backs, it was a delight and privilege to attend the above conference which focussed on physical activity (with a specific focus on young people at this year’s conference). As…

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Cyprus newest member ENFA : Posted on 28 Dec 2011

The ENFA committee is happy that they can announce the newest member Cyprus.

The Cyprus fibromyalgia association is a part of the Cyprus league against rheumatism and is as such active since 2010. For more information about this association please go to participants and then Cyprus. You can find some answers there or you can contact this association from there.

ENFA committee

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Happy holidays : Posted on 18 Dec 2011

                                                                                                         

 

                       ENFA committee wants to wish you all Merry Christmas and a good start of the year 2012.

 

                                                           

 

Read more >>

Succesful Launch Pain Alliance Europe : Posted on 08 Dec 2011

                                                                                                                                                                             

November 29th was the launch of the new Pain Alliance Europe, PAE. PAE is an alliance of patients associations from countries across Europe who have Chronic pain in common. ENFA was from the first start involved whit this and became one of the founding members of PAE.

The Launch took place in the European parliament and was sponsored by MEP Marian Read more >>

FROM RESEARCH TO ACTION : Posted on 14 Nov 2011

     From research to action

                              Physical activity and exercise in rheumatic diseases.

Whit this name the Swedish Rheumatism Association RSA presented a research which was execute by 9 Swedish Physiotherapist researchers together whit RSA

It contains the latest knowledge and translated into practical advice. Hopefully it will be understand by both professionals as patients.

 

For the full English version of the research follow the Read more >>

Launch PAE : Posted on 02 Nov 2011

 PAE – Pain Alliance Europe

Chronic Pain negatively impacts the lives of 75million European citizens daily thereby creating a profound economic burden on the European health budgets. 

In order to better address this major health issue Pain Alliance Europe (PAE)was recently formed.

PAE has come together as one voice to raise a greater awareness of Chronic Pain…

Read more >>

Forum Closed : Posted on 17 Aug 2011

Due to unauthorized use of the forum of ENFA the forum will be closed until we have found a solution for the problems. We apologizes for any inconvenience for the visitors. We will inform you when the problem is been solved and you are able to use it again.

The administrator and moderators 

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Report on "Milla Para" : Posted on 07 Jul 2011

The Spanish Association of Fibromyalgia and Chronic Fatigue from A Coruña (ACOFIFA) organized yesterday (July first) a popular race under the motto “Trapped in pain, fight against the Fibromyalgia”, The objective was  to inform and raise awareness about a disorder still unknown to society. The event took place at “jardines de Méndez Núñez”and …

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Report EMA meeting : Posted on 29 Jun 2011

                                                                                                                  

The European Medicines Agency has hosted a second workshop on the changes to the safety-monitoring of medicines in Europe, where it heard the expectations from patients, consumer groups, healthcare professionals and the pharmaceutical industry. ENFA representative was also present there.

The second stakeholder forum on the implementation of the new pharmacovigilance legislation, which took place on Friday…

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Volunteer of the month July. : Posted on 29 Jun 2011

                                    Volunteer of the month July.                                                 

Christine Leyns, president of the VLFP, Flemish Leaque of Fibromyalgia Patients, is chosen as volunteer of the month July by CERA.

CERA is a cooperative financial group which is build on the idea’s of Raiffeisen. CERA has a financial and a social assignment.

“Carpe Diem” is Christine’s…

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Article in THE LANCET : Posted on 28 Jun 2011

                                                                                                                                       

In THE LANCET of June 25th issue 9784 Prof. Dennis Turk PhD, Hillary D Wilson PhD & Prof. Alex Cahana MD Published an article on treatment of chronic non-cancer pain.

In an editorial article The Lancet refer to the Human Rights Watch Report Global Sate of Pain Treatment and coment on it as…

Read more >>

Particiaption whit EMA : Posted on 09 Jun 2011

                               Participation with EMA.                              

A representative of ENFA is invited to participate in the joint Annual PCWP / HCP WG meeting of the EMA on Thursday June 16th. On the agenda are items which are of importance for patients who are looking for information, those who are participating in clinical trials, geriatric developments and proposed changes on the pharmacovigilance legislation.

PCWP stands for Patient/Consumer Working…

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EULAR 2011 report : Posted on 07 Jun 2011

EULAR 2011 report

From May 25th/ 28th EULAR organized their twelfth Annual European Congress of Rheumatology in London, United Kingdom.

          As representatives of ENFA the president en treasurer,             Robert Boelhouwer and Joop van Griensven, went their to renew contacts and try to make some new. Although Fibromyalgia was not much…

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Reoprt Aniversary F.E.S. : Posted on 06 Jun 2011

25thAnniversary Dutch Fibromyalgia Association F.E.S.

On may 21th the Dutch Fibromyalgia association celebrated their 25thanniversary. The did that by organising a conference and workshops for the members during the whole day. In the morning there was a plenary session in which the President of the F.E.S.  and the Honorary Chair addressed the almost 500 present members.

The Honorary Chair who was the former member of parliament…

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Pain Alliance Europe? : Posted on 18 May 2011

On May second 2011 the first meeting was organized in Brussels to come to some sort of an European Pain Patient network. During a long session representatives from several European countries came to the conclusion that this idea was a good one Pain patients from across Europe could benefit of this. The suggested title for this new alliance would be:

PAIN ALLIANCE EUROPE (PAE)

Off course there…

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ENFA at SIP meeting 3&4 May Brussels : Posted on 16 May 2011

During this two day event ENFA representatives were active lobbying for the Fibromyalgia patients across Europe. As the meeting was about chronic pain and its social impact on people and society Fibromyalgia was one of the diseases which was mentioned in workshops.

280 people attended the plenary sessions and the workshops. It was a mixture of  scientist, physicians, politicians, policy makers, industry and patients. 

During the closing session the…

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Pain therapy’s in Europe in misbalance. : Posted on 26 Apr 2011

Pain therapy’s in Europe in mis balance.

Several reports on pain research and treatments of pain patients shows a lack of constancy  and insufficiency in pain treatment. Therefore the costs of pain patients to society are more than should be. Training health professionals for making an early diagnose and more adequate treatment could lower this burden for patients and society

A German report speaks…

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Road map to Action : Posted on 15 Apr 2011

After consultation of the ENFA committee members we did agreed on endorsing the   Road Map to Action made up by EFIC and to distributed during the 2nd  Symposium "Social Impact of Pain"at the European parliament Brussels on May 3-4 2011

If anyone is interested in endorsing…

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Chronic musculoskeletal disorders: assessment and intervention : Posted on 13 Apr 2011

Recently the dissertation of Miriam van Ittersum is published on "Chronic musculoskeletal disorders: assessments and intervention" .The Dutch fibromyalgia patient association was involved in the research and an article on this was published in the "FES Magazine" The results of the conducted research can be of interest for healthcare providers across Europe. The research shows that simply providing information is not effective enough. More has to be done.

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75 European organisations endorse symposium : Posted on 13 Apr 2011

 

 

 

75 European organisations endorse symposium on the "Societal Impact of Pain" in the European Parliament.

On 3-4 May 2011, almost 300 European health care stakeholders from more than 30 EU member states will come together in the European Parliament in Brussels to discuss…

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The EU Clinical Trials Register : Posted on 25 Mar 2011

EU Clinical Trials Register goes live

Public online register gives access to information on clinical trials

The EU Clinical Trials Register (https://www.clinicaltrialsregister.eu) was launched today by the European Medicines Agency (EMA). The online register gives for the first time public access to information on interventional clinical trials for medicines authorised in the 27 EU Member States and Iceland, Liechtenstein and Norway.…

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EBC – European Brain Council : Posted on 17 Mar 2011

Setting the scene for discussion and raising awareness of neuroscience research in Europe.

EJN is publishing the 2011 version of Consensus Document on European Brain Research (European Journal of Neuroscience, Vol. 33, pp. 768–818, 2011). The Consensus document on European Brain Research, prepared by European Brain Council - EBC in collaboration with more than 200 European scientists and patients organizations, contains both proposals for future…

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PatientsView report. What do patients think of doctors? : Posted on 02 Mar 2011

         PATIENTS THINK THAT DOCTORS STAND IN THE WAY OF THEIR RECEIVING THE BEST TREATMENT AND CARE SAYS A GLOBAL SURVEY OF 2,500 PATIENT GROUPS (INCLUDING ALMOST 2,000 GROUPS FROM WESTERN AND EASTERN EUROPE)

A 400-page report, What do patients think of doctors?, published in…

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EMA on line web survey on users experience : Posted on 18 Feb 2011

The European Medicines Agency (EMA)  has launched a new online survey to gather user feedback on the Agency's website (EMA).

The survey, which runs until Friday 11 March, will help the Agency form a clearer picture of how stakeholders such as patients, healthcare professionals, regulators and industry use the Agency's online information. The survey will take about ten minutes to complete. The final…

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ENFA will attend SIP symposium May 3 and 4 : Posted on 07 Feb 2011

ENFA's delegates will attend the SIP (Social Impact of Pain) Symposium May 3 and 4 in The European parliament in Brussels Belgium. They will present a lecture on how it is to be a fibromyalgia pain patient and what the added value is of the European Network of Fibromyalgia Associations.  

During days of the symposium they will talk to the delegates of other stakeholders such as scientist,…

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European Commission is seeking our assistance : Posted on 13 Jan 2011

The European Commission is seeking the views of public and private organizations, companies and individual citizens on how Europe could scale up innovation to meet the challenges of the ageing population in Europe, and in particular on a pilot European Innovation Partnership (EIP) on active and healthy ageing. Between 2010 and 2030, the number of Europeans aged over 65 will rise by nearly 40%, posing huge challenges but also offering great opportunities for Europe's society and economy. The EIP,…

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New Year : Posted on 01 Jan 2011

The year 2010 comes to an end. The month of December is to look back on.

For ENFA it is a year with varying success. We welcome Slovenia as a new member. In October we were invited to attend the First European Forum on Fibromyalgia in La Coruna. A very good organised Conference by the Fibromyalgia Association ACOFIFA in La Coruna. Besides a lot of understanding lectures by professionals we also made friends. ENFA held also his General…

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FINAL WORKSHOP PATIENT PARTNERING IN CLINICAL TRIALS : Posted on 22 Dec 2010

FINAL WORKSHOP PATIENT PARTNERING IN CLINICAL TRIALS

BRUSSELS 7 & 8 December 2010.

 

Patient Partner is a European Project investigating, enforcing and advising on the role of patient organizations in clinical trials.

With this Final European Workshop, Patient Partner held its last major dialogue session with all of the involved stakeholders. What is the patients perspective in clinical trials.

There were three working group sessions focusing on ethical principles, building bridges to partnerships…

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Pain Tool Kit : Posted on 22 Dec 2010

From a news letter received from the Pain Tool Kit team we were informed that the pain toolkit is now also available in more languages.

These tool kits are free to download for every one. Just go to their Website www.paintoolkit.org and follow the instructions on the site.

We believe this can be of help for a lot of people…

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Renewed appeal : Posted on 29 Nov 2010

SEEKING PARTICIPANTS TO FILL OUT A QUESTIONNAIRE ON UNDERSTANDING AND LACK OF UNDERSTANDING FOR RHEUMATIC DISEASES: 

 

 

SEEKING PARTICIPANTS TO FILL OUT A QUESTIONNAIRE ON UNDERSTANDING AND LACK OF UNDERSTANDING FOR RHEUMATIC DISEASES: 

Available in more languages

Patients with any rheumatic disease are asked to participate in a questionnaire study on the internet. Filling out the questionnaire will take approximately 20…

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PARE meeting "Lets work together" Berlin : Posted on 22 Nov 2010

Short report of the EULAR Autumn Conference for PARE in Berlin 5-7 November 2010.

The theme of the Conference was “Let’s work together”.

There were a lot of speakers with interesting topics. One of these was the report of the EU Belgium Presidency Conference on Rheumatic and musculoskeletal diseases. This Conference was organised by EULAR in collaboration with the Belgium EU Presidency on 19 October 2010. The Belgian EU Presidency feels that there is a need to…

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Pain proposal presented : Posted on 09 Nov 2010

Pain Proposal

Chronic pain presents a major challenge to the citizens and the economy of Europe – one that is likely to worsen as the population ages. A 2006 survey shows that one in five Europeans suffer from chronic pain, with most experiencing it for over two years and some people enduring it for up to 20 years or longer.

On September 28th a pain proposal was given to 28 members of the European Parliament. The pain…

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1th European forum on Fibromyagia in La Coruna : Posted on 20 Oct 2010

The first European forum on Fibromyalgia “I Foro Europeo De Fobromialgia”  organized by the Spanish association ACOFIFA was a great success. The Spanish association ACOFIFA has done a tremendous job of organizing a Forum on October 8th , 9th and 10th where several speakers of international fame were present. As wide a variety of aspects of fibromyalgia as possible were explained. The people present, about 350, were likewise made…

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Dr Mark Cropley, University of Surrey, seeks your assitence : Posted on 17 Sep 2010

Volunteers Needed

Sleep, quality of life and well-being in adults with Fibromyalgia Syndrome

We invite you to participate in our internet based questionnaire study exploring the effects of different aspects of sleep on quality of life and well being in adults with Fibromyalgia Syndrome. The study will be conducted by Dr Mark Cropley and colleagues at the University of Surrey.

This internet based questionnaire will ask about various aspects and symptoms of…

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London Loop Walk : Posted on 05 Sep 2010

Pam Stewart, Vice-President of ENFA and Chair of the UK fibromyalgia association is walking the LONDON LOOP. A walk of 150 miles. She is doing this to rais awareness for Fibromyalgia. If you want to read more of find out how to support Pam in her effort read this.

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Scientific research on Tai Chi and Fibromyalgia : Posted on 19 Aug 2010

We just received the information about a research on Tai Chi and Fibromyalgia. Although a lot of patients will confirm this, now it is been shown that Tai Chi can help Fibromyalgia patients. An Abstract of the research was published in the New England Journal of Medicine of August 2010. They also published an editorial item about the research.
The Bottom line from the trial is that the research shows that there are clinical importent improvements and there were…

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Resting Brain Activity Associated with Spontaneous Fibromyalgia Pain : Posted on 10 Aug 2010

Today we received the news that in the August issue of Arthritis & Rheumatism an article will be published with the title; Resting Brain Activity Associated with Spontaneous Fibromyalgia Pain.
The publisher Wiley-Blackwell has published a journal reference which makes it possible for us to attent you all. To read the journal reference click here.
The research is conducted by:  Vitaly Napadow, Lauren LaCount, Kyungmo Park, Suzie As-Sanie, Daniel J. Clauw, and…

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Article about EULAR : Posted on 26 Jul 2010

We are pleased that we received an article which is published in the magazine of the Fibromyalgia Association UK. It is about the visit on the last EULAR event in Rome. It gives an impression of the conference and what was presented on fibromyalgia. If you want to read the whole article click here.
We would like to thank the author for here permission to put this article on our website.

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1 European Forum of Fibromyalgia : Posted on 08 Jul 2010

ACOFIFA, ENFA’s  Spanish member, has organized the first European Forum of Fibromyalgia in A Coruna, Spain for  October 8th, 9th and 10th.

An international group of speakers  will talk about different aspects of Fibromyalgia on Friday 8th and Saturday 9th.  Because of their different background they will look at Fibromyalgia as a disease, a…

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ENFA presence at EULAR conference in Rome June 16th June 19th : Posted on 05 Jul 2010

ENFA presence at EULAR conference in Rome June 16th June 19th. Four committee members from ENFA visited the EULAR conference in Rome. They did this to renew contacts they had made in previous years and to make some new contacts. Their first goal was to get in contact with other associations. That’s why they invested much time in the PARE sessions and attended the social dinner…

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Your assistance asked : Posted on 01 Jul 2010

For a international scientific research about understanding and lack of understanding, your help is wanted. The questionaire is availble in different languages.




SEEKING PARTICIPANTS TO FILL OUT A QUESTIONNAIRE ON UNDERSTANDING AND LACK OF UNDERSTANDING FOR RHEUMATIC DISEASES:
Patients with any rheumatic disease are asked to participate in a questionnaire study on the internet. Filling out the questionnaire will take approximately 20 minutes. The aim of the…

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Deutscher Fibromyalgietag : Posted on 29 Jun 2010

Deutscher Fibromyalgietag in Bad Kissingen

The German Fibromyalgia Association DFV had their annual fibromyalgia day on May 8th in Bad Kissingen.
Their President, Margit Settan, welcomed the visitors and wished them a fruitful meeting. In the morning session three lectures were held about pain, psychotherapy possibilities and feel good therapy on fibromyalgia.
During the lunch hour people could visit all kinds of…

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12 May international day : Posted on 09 Jun 2010

Across Europe there were conferences and other awareness happenings organised on May 12th the international day of Fibromyalgia.

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Committee meeting agenda : Posted on 09 Jun 2010

As representatives of ENFA are visiting the EULAR conference in Rome from june 16 till June 19th they also have an Committee meeting. The ENFA committee meeting will take place on 18 06 10 Rome.
The Agenda for this meeting is as follows:
 
1. Apologies
2. Minutes of last meeting
3. Matters arising
4. Chair’s report
5. Financial report
6. Website update
7. ENFA´s budget to finance travel expenses for committee members
8. EPF meeting
9. ENFA´s pamphlets
10. ACOFIFA´s role as Political…

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Slovenia newest member : Posted on 01 Jun 2010

Slovenia is from June first the newest member of ENFA. It is therefor the 14th member of ENFA and the 12th country which is represented in ENFA. All the ENFA members are happy that there is a new country supporting them and are hoping much more will follow. There is still room for a lot of associations

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EPF general meeting : Posted on 18 May 2010

The president of ENFA attended the general meeting of the EPF (European Patient Forum) on May 18th. He was informed of how to become a member of that forum and was talking to other steakholders.

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ENFA present at European Hearing : Posted on 14 Apr 2010

On April 14th the treasurer of ENFA attended the European parliament hearing on: Impact of Internet Pharmacy and Medicine Services on Patients Healtcare and Safety. His report.

On April 14th, I went to the European Parliament to attend the hearing from the ALDE party on: Impact of Internet Pharmacy and Medicine Services on Patient Healthcare and Safety.

Chairs were the MEP’s Marian Harkin from Ireland and Antonyia Parvanova from Bulgaria.
There were some very interesting speakers. Some of you may know them.…

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Europe Fibromyalgia Action Day : Posted on 17 Mar 2009

On Saturday 7 March 2009 simultaneously at 16:00 (Brussels time) in Paris, London, Amsterdam, Frankfurt, Brussels, Dublin, Milan, Lisbon and Madrid a passive demonstration took place where fibromyalgia community members trod the pavements of these cities. It was reported that 1000-2000 sympathizers gathered in Madrid and 100 where in Milan. The Media, the politicians, the medical professionals, the patients and the sympathizers raised awareness for an hour all over Europe. ENFA…

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Thank You MEP's, Thank you fibromyalgia supporters : Posted on 16 Dec 2008

The written declaration 69/2008 about fibromyalgia reached the quotum to be accepted by the European Parliament. This acceptance means that the first but important step on a long way to get fibromyalgia recognized in all the European countries has been taken. The awareness of the condition of fibromyalgia by the members of the European Parliament could be an example for national politicians for actively addressing their national…

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Anniversery programm Dutch Fibromyalgia Association : Posted on 30 Nov 1999

25th anniversary F.E.S. on Saturday 21th May 2011

The program for the 25th anniversary of the Dutch fibromyalgia association F.E.S. has been published. It shows a lot of activity for the patients.

The day starts at 10.30 with some speeches from the president of F.E.S., Mrs Johanna Boogerd-Quaak and the anniversary day chair, Mrs. Hannie van Leeuwen. It will be followed by a lecture from…

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Survey results from MEP : Posted on 30 Nov 1999

For the MEP award ceremony DODS conducted a survey among the MEP's on the EU responsibilities around Fibromyalgia.

The results were send to all of the MEP's and are also availble for you. To read it click here.

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