No Policy without Patients! The EURORDIS Membership Meeting 2009 Athens on 8-9 May More than 200 participants attended the last EURORDIS Annual Membership Meeting on 8-9 May in Athens, Greece. Participants from 27 countries from inside and outside Europe gathered for an exciting mix of presentations, debates, and working sessions. The conference was the occasion to bring to the forefront three underlying strategic issues for the European rare disease community: the Commission Communication and Council Recommendation on Rare Diseases, National Plans for Rare Diseases and Patient Empowerment. All presentations and a selection of photos and videos can be seen on EURORDIS’ website
Online Patient Communities: learning from the Duchenne Community Online patient communities are especially interesting for rare disease patients for whom, because of the rarity of their condition, it is crucial to connect with other patients and carers, as well as clinicians and researchers. The Duchenne community is a pioneer in the field of online patient communities and self-reporting registries. In this article you will find out how they have used the Internet to link together thousands of Duchenne patients and carers all over the world and have already started to influence research.
Marfan syndrome: the silent disease Marfan syndrome is a genetic disorder of the connective tissue that can affect the skeleton, eyes, heart and blood vessels. Véronique Vrinds, a Belgium patient and Maelle Pérez from the Swiss Marfan Foundation, tell how they battle this disease.
European Council Recommendation on Rare Diseases adopted EURORDIS welcomes the final adoption by the European Council on June 9th, 2009, of the proposed Council Recommendation on European Action in the field of Rare Diseases. The Council Recommendation represents an important milestone for rare disease patients all over Europe.
Two EURORDIS patient reps appointed to the COMP EURORDIS welcomes the appointment of two of its members as patient representatives at the Committee for Orphan Medicinal Products (COMP) of the European Medicines Agency (EMEA). Ms Lesley Greene has been elected as member of the Committee for the first time and Ms Birthe Byskov Holm has been elected for the third consecutive time. They are both two long-standing and active members of the rare disease community and bring over 20 years experience working with rare disease patients and orphan drugs.
Terkel Andersen, President of EURORDIS, receives award Terkel Andersen received The Major Agrenska Award 2009 for his excellent work for people with rare diseases. The award was presented on June 3rd, in Gothemburg, Sweden, by Queen Silvia of Sweden, on the occasion of AGRENSKA’s 20th Anniversary.
Three new members elected to the Board of Directors of EURORDIS We are happy to welcome Avril Daly, Béatrice de Montleau and Mirando Mrsić, as newly-elected members of the Board. We thank them and wish them all the best to perform their new functions.
New NIH Program encourages development of treatments for rare & neglected diseases The NIH has launched a $24 million initiative called The Therapeutics for Rare and Neglected Diseases Program (TRND) that aims to develop new treatments for rare and neglected diseases. TRND will focus on diseases that private companies have not been working on and stimulate collaborations between academic scientists to advance the process of preclinical research and product development. Relationships with patient advocacy organizations, disease-specific foundations and pharmaceutical companies will also be emphasized to efficiently move promising drugs to the clinical trial stage of development.
The report gives the 2008 highlights of Eurordis’ work in the areas of networking & communications; access to information, diagnosis, treatment & care; advocacy & policy development; and therapeutic development & research, among other topics.
The 4th European Conference on Rare Diseases (ECRD) Lisbon 2007 Report is now available
The European Conference on Rare Diseases 2007 Lisbon (ECRD) was the 4th in a series of health and research policy conferences organised every two years by Eurordis. On the 27th and 28th of November, more than 400 people from 35 countries shared their views and proposed actions for rare diseases.
Take the Rare Diseases Online Quiz How much do YOU know about rare diseases? Take the Rare Diseases Online Quiz on CNN TV’s "Vital Signs" website to find out. Take quiz >
Eurordis Activity Report 2008 is now available 
BOOK: "The Voice of 12,000 patients" 
The 4th European Conference on Rare Diseases (ECRD) Lisbon 2007 Report is now available 
