What is Rare Disease Day?

Launched by EURORDIS and its Council of National Alliances in 2008, Rare Disease Day has and continues to collaborate with organisations globally in order to put on events, create media coverage, and ultimately raise awareness amongst the general public and policy-makers about rare diseases and their impact on patients’ lives.

The strong momentum behind the cause and for the international campaign around Rare Disease Day was started and continues to be led by patients and patient organisations. The primary drivers and beneficiaries of the international campaign are the millions of people around the world living with a rare disease and their families.

Rare Disease Day also serves in helping to generate the political momentum necessary to further advocacy purposes. In the past, Rare Disease Day has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries. The objective is for the last day of February to become officially recognised as Rare Disease Day by the World Health Organisation and to raise increasing awareness for Rare Diseases worldwide.

Rare Diseases International (RDI) continues to be a strong common voice on behalf of all people living with a rare disease around the world. In February 2017 a-first-of-its-kind event took place in Geneva which brought together international experts in the fields of public health, human rights, scientific research, patient advocacy and the health industry to discuss why and how rare diseases should be part of the global health agenda.

On rarediseaseday.org you can find more information about Rare Disease Day as well as about the thousands of events happening around the world to build awareness for people living with a rare disease, and the support groups around them. If you would like to get involved, register your details on our Post your Event in order to get your event listed.

Rare Disease Day 2018

Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.
On 28 February 2018, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for greater patient involvement in research on rare
diseases. Over the last few decades, funds dedicated to rare disease research have increased. But it can’t stop there.
Rare Disease Day 2018 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
Rare disease patients and families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together to raise awareness of rare diseases through thousands of events all over the world.
Rare Disease Day 2018 is also an opportunity to recognise the crucial role that patients play in research.
Patient involvement in research has resulted in more research, which is better targeted to the needs of patients. Patients no longer solely reap the benefits of research; they are empowered and valued partners from the beginning to the end of the research process. Patients:

  • Advocate for research on a specific disease or across diseases. They know where research is needed and work to influence research bodies and companies to prioritise these areas in their research.
  • Fund research. Individuals or patient organisations such as the AFM-Téléthon often raise money for clinical trials or research projects, on their own or in partnership with private funding initiatives.
  • Partner in research projects and are included in the governance of research.
  • Participate as subjects in clinical trials and also in the design of clinical trials. They therefore help to ensure that the development of a medicine takes into account their real needs, so that the patient perspective is not overlooked.