February 29, 2020, will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities.
What is the rare disease day?
The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, this month is known for having a ‘rare’ number of days. Rare Disease Day is the opportunity advocate for rare diseases as a human rights priority at local, national and international levels for a more inclusive society.
Rare Disease Day takes place on the last day of February each year. The primary objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.
Building awareness of rare diseases is important because 1 in 20 people will live with a rare disease at some point in their life. There is no cure for the majority of rare diseases, and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision-makers to address the needs of those living with rare diseases.
Because it manifests itself only rarely, Duchenne muscular dystrophy (DMD) falls within the rare diseases category. Learn about our history here.
Raising awareness of what it means to be rare. There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we need more equitable access to diagnosis, treatment, care and social opportunity.
Rare is many worldwide — Rare is strong every day — Rare is proud everywhere
Statistics and facts
- 300 million people living with a rare disease worldwide
- Over 6000 different rare diseases
- 72% of rare diseases are genetic
- 70% of those genetic rare diseases start in childhood
- Rare diseases currently affect 3.5% – 5.9% of the worldwide population.
- If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. In Quebec, it is estimating that close to one in 20 people will be affected or have a rare disease, which means nearly 500,000 Quebeckers.
- 30% of children with rare disease will not live to see their 5th birthday
- Rare diseases are responsible for 35% of deaths in the first year of life.
- Only 5 percent of rare diseases have treatments. Drug research that helps a limited number of people can be cost-prohibitive for pharmaceutical companies.
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Stay up to date with the latest news from this year’s Rare Disease Day campaign by following them on Facebook, Twitter and Instagram.
Finding a support group is important
A rare disease can be isolating for the patient as well as for the caregiver, especially when it’s your child who has the condition. Connecting with others can be essential, not only for support but also to share information and resources.
The Quebec Coalition for Orphan Diseases (RQMO) works to provide information and support to patients, their families, and healthcare professionals. Their website is full of relevant information both for professionals and caregivers. These rare diseases are often of little interest to researchers and organizations who fund research. The RQMO aims to advance knowledge about the various rare and orphan diseases by promoting exchanges between patients and researchers.
The Canadian Organization for Rare Disorders (CORD) is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong collective voice to advocate for health policy and a healthcare system. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment, and services for all rare disorders in Canada.
February 29th is the Rare Disease Day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
We wish to emphasize that the information contained in this article comes mainly from the RQMO website, the CORD website and the Rare Disease Day website.
We thank them.
