Rare Disease Day
Rare Disease Day —MPN Roundtable from MPN Research on Vimeo.
Today is the tenth edition of Rare Disease Day. Thousands of people from all over the world will come together to advocate for more research on rare diseases. Over the last few decades, funds dedicated to rare disease research have increased due to advocacy.
But it can't stop there! Rare Disease Day 2017 is an opportunity to call upon decision makers to prioritize research for the rare disease community.
Rare Disease Day 2017 is also an opportunity to recognize the crucial role that patients play in research. Patient involvement 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 priorities these areas in their research.
- Fund research. Individuals or patient organizations such as the MPN Research Foundation often raise money for research projects.
- Participate as subjects in clinical trials and in the design of clinical trials. They therefore help to ensure that the development of new therapies takes into account their real needs, so that the patient perspective is not overlooked.