Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases.
28 February 2018 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research. Rare Disease Day 2018 is 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 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 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. Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. Narcolepsy, Idiopathic Hypersomnia, Kleine Levin syndrome, and Non-24-Hour Sleep-Wake Disorder are all recognised rare diseases.
For more information about these sleep disorders: Narcolepsy Idiopathic Hypersomnia Kleine Levin syndrome Non-24-Hour Sleep-Wake Disorder You can also check out the Genetic and Rare Disease (GARD) Information Center or Orphanet Read about the 2018 Rare Disease Day campaign
“With research, possibilities are limitless” - Rare Disease Day
"Rare diseases are rare, but rare disease patients are numerous" - Orphanet