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EURORDIS announced the recipients of the 2022 Black Pearl Awards
16 February, Paris – EURORDIS-Rare Diseases Europe is pleased to announce the recipients of the 2022 Black Pearl Awards: Media Award – EwenLife Members Award – Childhood Cancer International Europe (CCI-E) Lifetime Achievement Award – Dr. William Gahl Volunteer Award – Graham Slater Company Award for Patient Engagement – European Alliance for Newborn Screening in SMA Company Award for Health Technology […]
Special New Year’s message from EURORDIS Chief Executive Officer, Yann Le Cam
A special message from Yann Le Cam, EURORDIS Chief Executitve Officer on the aspirations of the rare disease community for 2022. 2021 ended as it started, with COVID-19 spreading across Europe, threatening the lives of many, especially those living with a rare disease and their families. We have all had to be especially careful, which […]
European Reference Networks
What are the European Reference Networks and why are they a priority for people living with a rare disease? Finding the right expert for a rare disease and accessing care remains a challenge for many of the 30 million people living with a rare disease in Europe. Often the only doctor who has expertise in […]
Social Policy Action Group (SPAG)
The Social Policy Action Group (SPAG) supports EURORDIS’ work to shape policies and practices that improve the access of people living with a rare disease and their families to holistic care, and the guarantee of their social and human rights. The SPAG is composed of 20 volunteers, representing 13 European countries and a diversity of […]
European Policy
While collectively the number of people living with a rare disease is high, patient populations for each of the 6,000 rare diseases are low and patients are scattered across countries. The most effective strategies for rare diseases to improve the lives of EU citizens are therefore cross-border and EU-wide. Working closely with our members, we […]
Lessons learnt: Building back better from COVID-19
Over the past year and a half, the COVID-19 pandemic has affected every household in the world, causing significant economic and social disruptions and challenging our approach to public health and social care. The rare disease community was particularly affected. People living with a rare disease have been caught in the collateral damage of the pandemic: essential treatment and care severely disrupted for 84% of people living with a rare disease in Europe. At the same time, 3 in 10 found these interruptions to be life-threatening. Everyone in our community has felt this extra vulnerability, this need for extra support, and, too often, this extra physical or mental suffering. Today, as the world is slowly learning to live with COVID-19, with the vaccine increasingly available across countries and regions, we ask ourselves: would we be where we are now without contributions from the rare disease community? And more importantly: where do we go from here? Rare disease research & best practices in addressing COVID-19
Dorica Dan
Vice-President of EURORDIS-Rare Diseases Europe Dorica Dan was appointed Vice-President in 2022. She was elected to the Board of Officers in 2011 and has been a member of the EURORDIS Board of Directors since 2007. Dorica is the mother of a daughter who was diagnosed with Prader Willi Syndrome at the age of 18. Dorica […]
Ariane Weinman
Ariane Weinman joined EURORDIS in 2004 and works in the Public Affairs team. She is involved in European public health projects where EURORDIS is the leader or partner, currently the EU Joint Action for rare diseases, RD-ACTION, and the EU Joint Action for Rare Cancers, JARC. She is particularly involved in supporting the work of patient advocates in a) […]
The EURORDIS Open Academy: empowering patients to be valued partners
Through the Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development. Open Academy alumni engage in these discussions as equal partners, side by side with policy makers, industry and scientists, to effectively improve care, treatment and the lives of people affected by a rare disease. Alumni Denica Velkovska has just seen her national health care system in North Macedonia authorise funding for a treatment for all patients up to the age of 18 with spinal muscular atrophy, the same rare disease her 10-year-old son is living with. She spoke of her experience, “The Summer School gave me the pieces of the puzzle I was missing or reassured any doubts I had. I learnt a lot about the relevant regulations and also the true power that patients can have to advocate. For a long time, we had had problems accessing the treatment my son needed. The knowledge I gained at the Summer School helped me see how to proceed in my advocacy efforts in the best way possible and helped me influence change.”
Get involved in European Reference Networks
Due to the nature of rare diseases, small patient populations are often scattered across the EU, sometimes in isolated locations where expertise does not exist or cannot be accessed. A doctor with the expertise needed to help treat a patient living with a rare disease may be based in another country. European Reference Networks (ERNs) will provide for the first time a unique opportunity for clinicians to work cross border in Europe in order to tackle this challenge. They are networks of centres of expertise and healthcare providers that support clinicians and researchers to share expertise, knowledge and resources across the EU. By ensuring doctors have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care. The European Commission launched the first call for interest from networks wanting to become ERNs in March 2016. 24 applications have been received with 370 hospitals and almost 1000 highly specialised units involved. Successful ERN applications will be announced in early 2017 ERNs use relevant communication and eHealth tools to enable the mobility of expertise across borders, rather than the movement of patients who travel to access care that does not exist in their country. ERNs are required to involved patients. EURORDIS is laying the groundwork for the participation of patients in the activities and governance of ERNs: