Rare Disease Day
Rare Disease Day is a global campaign created in 2008 and coordinated by EURORDIS, which aims to raise awareness and advocate for the needs of people living with rare diseases. The campaign takes place every year on the last day of February and involves events and activities organised by patient organisations, healthcare professionals, policymakers, and other stakeholders in over 100 countries worldwide.
Open Academy
The EURORDIS Open Academy is a unique training and education programme that provides both online and in-person training programmes for patient advocates and other stakeholders in the rare disease community.It offers rare disease-specific comprehensive training programmes that empower advocates with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners.
Rare Barometer
The EURORDIS Rare Barometer Programme is an exceptional initiative that gathers information and insights directly from people living with rare diseases and their families. The programme provides a comprehensive overview of the needs, expectations, and experiences of rare disease patients and helps shape policies and practices that impact their lives.
Rare Disease Week
Brussels Rare Disease Week is a week-long series of events organised by EURORDIS. It targets rare disease patient advocates with a view to empower them with knowledge and skills to effectively participate in advocacy activities at the European level and influence the EU decisions that have a direct impact on the lives of people living with a rare disease.
Events
Black Pearl Awards
The EURORDIS Black Pearl Awards (BPA) is an annual event that recognises and honours the achievements of individuals and organisations that have made significant contributions to the rare disease community. The awards celebrate the diversity and resilience of the rare disease community, highlighting the tireless efforts of patient advocates, healthcare professionals, researchers, industry leaders, and policy makers who are working towards improving the lives of people living with rare diseases.
ECRD
The European Conference on Rare Diseases and Orphan Products (ECRD) is a biennial event that brings together patients, patient advocates, researchers, healthcare professionals, industry representatives, and policy makers to share knowledge, best practices, and experiences in the field of rare diseases. The conference is organised by EURORDIS, and is the largest multi-stakeholder gathering in Europe dedicated to rare diseases and orphan products.
ERTC
The EURORDIS Round Table of Companies provides a forum for open and constructive dialogue between industry and patients, with the aim of improving the research and development process, increasing access to innovative therapies, and ensuring that the needs and perspectives of patients are fully integrated into the drug development process.
Other initiatives and partnerships
EURORDIS plays a vital role in a range of initiatives aimed at improving the lives of people with rare diseases. RareConnect, an online community for rare disease patients and advocates, is one such initiative that has been launched by EURORDIS.
Additionally, we co-chair the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease, which aims to improve diagnosis for children with rare diseases.
EURORDIS is also a member of the NGO Committee for Rare Diseases and was a founding member of Rare Diseases International, which serves as the global alliance of rare disease patient organisations.
In line with our patient-focused approach, EURORDIS created the EUROCAB Programme, aimed at gathering patient advocates to discuss the latest developments, challenges and issues related to medical research in their disease area. The programme is now managed by EUPATI Spain.
EURORDIS is also a member of the International Rare Diseases Research Consortium (IRDiRC), a global consortium aimed at advancing rare disease research and diagnosis.