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Rare Barometer Programme

Rarebarometer poster

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. Through surveys available in multiple languages, the programme identifies gaps in care and support, highlights areas where improvements are needed, and informs the development of policies and programmes that better meet the needs of the rare disease community.

The Rare Barometer Programme is a prime example of how patient-centric approaches can drive meaningful change in healthcare. By putting patients at the centre of the conversation, the programme empowers them to share their experiences and insights, helping to shift the focus from disease to people, from treatment to care, and from problems to solutions. This approach not only benefits individuals living with rare diseases but also contributes to the overall advancement of rare disease research and care.

Rare Disease Day (RDD)

Rare Diseases Day poster

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. It provides an opportunity to highlight the challenges and unmet needs faced by the rare disease community and the progress being made in research, diagnosis, treatment, and care.

Rare Disease Day has become a powerful platform for raising awareness, driving change, and improving the lives of people living with rare diseases. Through its global reach and collaboration with patient organisations and other stakeholders, the campaign is helping to break down barriers, challenge stigma, and build a more inclusive and equitable world for all. By shining a spotlight on the rare disease community and its needs, Rare Disease Day is creating a sense of urgency and driving action to improve the lives of people living with rare diseases.

EURORDIS Open Academy

Open Academy poster

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. With courses on Medicines Research & Development, Scientific Innovation & Translational Research, Leadership & Advocacy, and Digital & Communication, the programme equips participants with the knowledge and skills needed to drive change and improve the lives of people living with rare diseases. In addition to in-person training, the programme also offers a number of online courses on a variety of subjects, providing flexible learning opportunities to suit the needs of participants around the world.

Through its expert faculty and innovative online platform, the EURORDIS Open Academy is helping to bridge the gap between patients, researchers, and industry, and promote a collaborative and patient-centric approach to rare disease research and care. By offering both online and in-person training programmes, the programme is making high-quality education and training accessible to a global audience, empowering patient advocates and other stakeholders with the tools and knowledge needed to navigate the complex rare disease landscape.

EURORDIS Round Table of Companies (ERTC)

EURORDIS Logo black

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.

Through its collaborative approach and patient-centric focus, the ERTC is driving meaningful change in the rare disease community. By fostering greater understanding and cooperation between industry and patients, the platform is helping to accelerate the development of new treatments and therapies, and ensuring that they are targeted to the needs and preferences of patients. The ERTC is also helping to break down barriers and build trust between industry and patients, creating a more open, transparent, and patient-centred research and development ecosystem.

European Conference on Rare Diseases and Orphan Products (ECRD)

ECRD poster

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.

Through its innovative format and broad range of topics, the ECRD plays a vital role in advancing the rare disease agenda and driving progress towards better treatment and care for patients. The conference provides a unique opportunity for stakeholders from different sectors and countries to come together, share their perspectives and expertise, and collaborate on solutions to the challenges faced by the rare disease community.

EURORDIS Black Pearl Awards (BPA)

BPA poster

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.

Through its unique approach and prestigious accolades, the BPA plays a vital role in raising awareness of rare diseases and promoting excellence in the field. The awards provide a platform for individuals and organisations to share their experiences and successes with a wider audience, inspiring and motivating others to get involved and make a difference. By showcasing the outstanding achievements of those who are dedicated to rare disease advocacy, research, and care, the BPA is driving progress towards a better future for all people living with rare diseases.

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.