EURORDIS Membership Meeting 2011 Amsterdam

Empowering the voice of patient advocates in National Plans for Rare Diseases

Casa 400 Amsterdam
  Amsterdam 2011

"No policy without us!” seemed to be in every patient advocate’s mind when they met for the EURORDIS Membership Meeting 2011 on May 12-14 in Amsterdam, Netherlands. The event entitled “The Voice of Rare Disease Patients in National Plans for Rare Diseases” attracted close to 250 participants from 30 countries to discuss the role of rare disease patient organisations in the promotion of national plans and strategies. Delegates came from all over the EU, as well as from other parts of the European continent including Croatia, Georgia, Ukraine and a strong delegation from Russia. Colleagues from USA, Canada and even Mexico also took an active part!

View the presentations online...

Over 250 attendees! See the photos ...

On the first day, all national alliances reported on the progress of the development of their National Plans for Rare Diseases (NPRD). National alliances also debriefed on the Rare Disease Day 2011 campaign “Rare but Equal” and selected “Solidarity” as the theme for next year. The discussions highlighted the successful strategic synergy between the awareness-raising actions of Rare Disease Day and NPRDs. Further actions were decided to coordinate efforts between EURORDIS and national alliances on the transposition of the EU Directive on Cross Border Health Care at national level.

In parallel, the Dutch Genetic Alliance (VSOP) and the Dutch Steering Committee on Orphan Drugs held a national conference of patient advocates to discuss the status of the Dutch NPRD, which is in disappointing and long-lasting limbo.

The second day of the Conference had a much broader audience and provided the opportunity to report back on the work that is being done to push for NPRDs to be drafted, adopted and implemented in all Member States by 2013. Much attention was given to the main outcomes and future directions of the EUROPLAN project as well as the outcomes of the 15 National Conferences on NRPD, which took place in the second semester of 2010. The patient’s role in the development of NPRD was illustrated by the French and Portuguese experience. At the end of the day, a round-table debate, facilitated by Antoni Montserrat, Scientific Officer in charge of rare disease Public Health Policy at the European Commission, tackled important questions, such as: How to push Ministries to implement National Plans? How to monitor their implementation? How to adapt to national realities and size of the country?

On the third day, delegates broke into smaller workshops to discuss essential measures, best practices and concrete experience in key areas of rare disease policy across countries. For many it was hard to choose between the Newborn Screening, Centres of Expertise and European Reference Networks, Patient Registries, Specialised Social Services, Training of Medical Doctors and Prevention workshops.

These capacity building workshops were designed to provide useful information to patient representatives to help them in their own advocacy actions. They were elaborated in partnership with existing projects and/or organisations, such as the Newborn Screening project, the EPIRARE project and the International Federation of Spina Bifida and Hydrocephalus. All sessions addressed the question of how best to integrate these important issues into national plans and strategies. At all workshops, feedback on the topic was provided from the 15 National Conferences on NPRD.

Throughout these three days, patient representatives had the opportunity to meet each other, as well as representatives from the worlds of industry, research and policy-making, in a more informal setting, as part of the social programme. Everyone enjoyed the welcome dinner in the beautiful Rose Garden ‘Rosarium’ and those who stayed until Sunday were able to go on a boat cruise to discover Amsterdam’s famous canals.

“I have no idea why it has been so long since I participated in a EURORDIS membership meeting.  But I got a big reminder of why I should!” says Wills Hughes-Wilson Senior Director, at Genzyme “This meeting was educational, fun, smooth, well-organised and a well-timed reminder of the community united behind our common goal.”

Dimitrios Synodinos
  Dimitrios Synodinos

General Assembly

An important element of the EURORDIS annual Membership Meeting is the General Assembly. This part of the conference, which took place on Friday morning, was open to members only and was the opportunity for them to elect their representatives. Dimitrios Synodinos from the Greek Alliance for Rare Diseases (PEPSA) was newly elected to the Board of Directors. Torben Gronnebaek (Denmark), Dorica Dan (Romania) and Rosa Sanchez de Vega (Spain) were re-elected for a 3-year mandate. After presenting EURORDIS’ Activity and Financial report 2010, participants engaged in a lively discussion, which showed tremendous support for the activities undertaken by and the future plans for the organisation, in particular the further enhancement of information sharing, networking and exchange of experience, as well as capacity building of patient advocates in national strategies for rare diseases.

This article was first published in the July 2011 issue of the EURORDIS newsletter
Author: Paloma Tejada
Photo credits: © EURORDIS

Page created: 16/06/2011
Page last updated: 24/10/2013
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases