News
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…
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
Happy holidays : Posted on 18 Dec 2011
ENFA committee wants to wish you all Merry Christmas and a good start of the year 2012.
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
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…
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
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 …
Report EMA meeting : Posted on 29 Jun 2011
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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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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.
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…
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.…
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…
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…
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…
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,…
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,…
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…
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…
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…
Renewed appeal : Posted on 29 Nov 2010
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…
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…
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…
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…
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…
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.
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…
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…
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.
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…
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…
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…
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…
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.
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…
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
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.
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.…
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…
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…
Anniversary program 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 Dr. Hans Cats, Rheumatologist on “Fibromyalgia Network Care”
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About us
Activities
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18th February 2012
European Network of Fibromyalgia Associations General MeetingEuropean Network of Fibromyalgia Associations General Meeting
February 18th 2012
Arora Hotel Heathrow London
The ENFA committee is pleased to announce that the General assembly meeting will take place on Saturday 18th February 2012. This will be an all day meeting and we would recommend that members arrive on the Friday evening.
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09th June 2012
EULAR Congres 
Representatives of ENFA will visit the Eular conference