The countdown has begun to Rare Disease Day 2019 on 28th February. People around the world are joining the global movement for rare diseases by taking part in the #ShowYourRare campaign, holding events and raising awareness.
There are over 6,000 rare diseases. The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. 30 million people are living with a rare disease in Europe and over 300 million worldwide. Due to the low prevalence of each disease, medical expertise is rare and knowledge is scarce and scattered across borders. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research. People often wait years for a diagnosis and struggle to access the medicines or care they need.
This year’s theme is ‘Bridging health and social care’, and it is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for rare disease patients and families.
A patient-led campaign, Rare Disease Day was launched by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008 and brings together millions of people in solidarity. A partner in the Penta coordinated project conect4children, EURORDIS leads the global community in organising Rare Disease Day, which takes place on the last day of February each year to raise awareness of the impact that rare diseases have on millions of people around the world. EURORDIS is a unique, non-profit alliance of over 800 rare disease patient organisations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
To mark the occasion of Rare Disease Day, EURORDIS is also holding a series of events throughout the month of February:
- The EURORDIS Black Pearl Awards (12th February, Brussels), an annual event held to recognise the outstanding achievements and exceptional work of people making a difference for the rare disease community. Attend or watch online.
- The 3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies (13th – 14th February, Brussels). Attend or watch online.
- Rare Disease Day Policy Event at the United Nations, Second High-Level Event of the NGO Committee for Rare Diseases (21st February, UN Headquarters, New York). Join online.