Since 2008, Rare Disease Day has taken place annually on the last day of February, the objective being to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
This year also sees the founding group, EURORDIS-Rare Diseases Europe, celebrating 20 years of achievements in the rare disease community.
What is a rare disease?
A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000 people. One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000. While an individual disease might be classified as rare, the total number of people in Europe suffering from one of over 6,000 identified rare diseases is estimated at over 30 million.
Rare Disease Day seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.
The Rare Disease Day 2017 theme is research and their chosen slogan: 'With research, possibilities are limitless'. This highlights that rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure, or improved care.
Rare Disease Day 2017 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. It 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 are able to:
• Advocate for research on a specific disease or across diseases
• Fund research
• Partner in research projects and be included in the governance of research
• Participate as subjects in clinical trials and also in the design of clinical trials
Since Rare Disease Day began, thousands of events have been held throughout the world reaching hundreds of thousands of people. The political momentum resulting from the day has also served advocacy purposes, contributing to the advancement of EU policies on rare diseases and to the creation of national plans for rare diseases in a number of EU member states.
Rare diseases are a subject close to our heart here at Solaris Health
Solaris Health is passionate about improving the lives of people affected by rare diseases and works with several clients who are developing cutting edge treatments or educational initiatives for rare diseases such as Fabry disease, Pompe disease, Leber’s hereditary optic neuropathy (LHON) and severe combined immunodeficiency due to adenosine deaminase deficiency (ADA-SCID).
A dedicated day for rare disease awareness helps remind us that though they may technically affect a small percentage of people, the real consequences for patients, their families, and carers are not insignificant.
If you or someone you care for has been affected by a rare disease, you can take advantage of rareconnect.org, a safe, easy-to-use platform where rare disease patients, families, and patient organizations can develop online communities and conversations across continents and languages.
If you want to help raise awareness, go to the following website to see seven ways in which you can participate in Rare Disease Day 2017: http://www.rarediseaseday.org/article/get-involved