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 over looked