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EURORDIS-Rare Diseases Europe calls on the European Commission for decisive action on rare diseases
Ministerial Conference hosted by the French EU Presidency in Paris on Rare Disease Day 2022 sees an appetite for coordination on rare diseases from EU Member States, the European Parliament and WHO-Europe, however, reinforces the European Commission’s lack of a strategic vision and ambition to keep up with the challenges. 28 February 2022, Paris – On Rare […]
The Members and Volunteers who are changing lives of people living with a rare disease: Meet the 2022 Black Pearl Awardees
What does it mean to be awarded a EURORDIS Black Pearl Award, and who are this year’s recipients? Meet the recipient of the EURORDIS Members Award 2022, Childhood Cancer International – Europe, and of the EURORDIS Volunteer Award, Graham Slater. The Black Pearl Awards ceremony was created by EURORDIS to shine a light on the […]
Rare disease community calls for additional doses of COVID-19 vaccine to protect the most vulnerable and extra measures to vaccinate more European citizens
13 October 2021, Paris – EURORDIS-Rare Diseases Europe is calling on national policy makers to consider booster doses for people whose immune systems have not fully responded to the initial vaccination, including people living with a rare disease, and additional measures to encourage more citizens to get vaccinated against COVID-19. People with moderate or severe […]
EURORDIS-Rare Diseases Europe urges governments across Europe and the world to make the third dose a priority for people with certain immune conditions
22 July 2021, Paris – EURORDIS-Rare Diseases Europe encourages EU Member States and countries across Europe and beyond to consider administering a third dose of vaccines against COVID-19 for transplant recipients, dialysis patients, patients taking immuno-suppressants and people with cancer and severe immune deficiency, including those living with a rare disease. While equitable access to […]
National plan for rare diseases: Denmark
Læs denne hjemmesides tekst på dansk (Read this page in Danish) The first Danish Strategy for Rare Disease was published by the Danish Health Authority in 2014. A working group consisting of relevant stakeholders from healthcare, social services, authorities and patient organisations, including representatives from Rare Diseases Denmark (the Danish Rare Disease Patients Alliance), contributed […]
National plan for rare diseases: Cyprus
Διαβάστε το κείμενο αυτού του ιστότοπου στα ελληνικά (Read this page in Greek) The current Cypriot Strategy for Rare Diseases was published by the Ministry of Health of Cyprus in 2012. The strategy was drafted by a Technical Committee appointed by the Ministry of Health, with the participation of relevant stakeholders from healthcare, social services, […]
Putting the COVID-19 vaccines in context for people with rare diseases
For people living with a rare disease, the perception of a health threat due to COVID-19 is high or very high in 71% of cases. As the first vaccines to prevent COVID-19 in Europe have been approved by the European Medicines Agency, people living with a rare disease, alongside all European citizens, are excited to take […]
Get involved in Rare Disease Day 2020!
Rare Disease Day 2020 is on Saturday 29 February, the rarest day of the year. With just over five weeks until the big day, now is the time to start getting involved and show support for the individuals and families affected by a rare disease! The campaign is open to everyone around the world to get involved - people living with a rare disease, their families and carers, plus policy makers, public authorities, industry representatives, researchers, health professionals and the general public. Through Rare Disease Day we want to raise awareness that:
Show Your Rare for Rare Disease Day 2018!
There are only two weeks left until Rare Disease Day 2018 on 28 February! Rare Disease Day has become iconic as the global campaign for raising awareness of the impact that rare diseases have on the lives of patients and those who care for them. A patient-led campaign, Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008 and brings together millions of patients, families, carers, medical professionals, policy makers and members of the public in solidarity. In 2018, organisations in over 90 countries and regions around the world are participating in Rare Disease Day by holding local events. For the first time ever, Togo, Ghana, and Trinidad and Tobago will participate in Rare Disease Day! The theme for Rare Disease Day 2018 is research. Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research. Get involved in Rare Disease Day 2018! Everyone can get involved in Rare Disease Day, those affected and unaffected by rare diseases alike: >>Show Your Rare on social media
Stars of rare disease community recognised at EURORDIS Awards Ceremony
The winners of the EURORDIS Awards 2017 were announced at a ceremony in Brussels on Tuesday evening. The EURORDIS Awards & Black Pearl Evening is held to mark the occasion of Rare Disease Day 2017. Vytenis Andriukaitis, European Commissioner for Health and Food Safety, presented the EURORDIS Awards to this year’s winners: