(CMR) Today, 29 February, is Rare Disease Day because it's a leap year and considered the rarest day of the year! This offers a perfect opportunity to raise awareness for people around the world living with rare diseases and the research and support that they so desperately need. There are some 300 million people living with a rare disease.
The rare disease community and its supporters come together today to share the message: Rare is many. Rare is strong. Rare is proud!
It is important to raise awareness about rare diseases and their impact on all communities including the Cayman Islands. The main objective is to have equitable access to social opportunity, treatment and care.
What is a rare disease?
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. This definition was created by Congress in the Orphan Drug Act of 1983.
Rare diseases became known as orphan diseases because drug companies were not interested in adopting them to develop treatments. The Orphan Drug Act created financial incentives to encourage companies to develop new drugs for rare diseases. The rare disease definition was needed to establish which conditions would qualify for the new incentive programs.
Other countries have their own official definitions of a rare disease. In the European Union, a disease is defined as rare when it affects fewer than 1 in 2,000 people. Rare diseases cover a broad spectrum and there may be as many as 7,000 including areas such as infectious diseases, autoimmune diseases, cancers, and birth defects. The exact number is unknown and new ones are discovered on a regular basis. The tracking of rare diseases often presents a real issue for medical professionals and government agencies. The sad fact is most rare diseases have no treatments but raising awareness can change all of that!
The UK strategy for rare diseases: implementation plan for England was published in January 2018.
This update on the strategy’s progress covers 5 main areas:
- empowering those affected by rare diseases
- identifying and preventing rare diseases
- diagnosis and early intervention
- coordination of care
- the role of research
Today, thousands of events including family fun days, sporting events, fundraisers, scientific conferences, art exhibitions, policy events and much more are taking place today across the globe in over 100 countries to bring about awareness.
You can also participate by joining in on social media by using the #RareDiseaseDay to add your voice to the campaign! Share your support of people living with rare diseases by spreading the word about their rare disease and your support of them and their families.
Social networking is critical and we would love to hear about your participation in the campaign!
Take a look at the interactive world map of Rare Disease Day events. Check out exciting updates as events unfold across the globe by staying tuned to Rare Disease Day Facebook, Twitter and Instagram.
Who is Royale Medical?
Royale Medical and Well Center is a fully certified medical facility that provides acute care and other specialized services including an on-site laboratory offering you the best available care in George Town. We have a team of highly qualified medical professionals at your disposal at our state of the art medical facility conveniently located in Bay Town Plaza on West Bay Road.
Centrally located in the tourist hub of George Town we are an ideal facility for cruise passengers and emergency care cases. Message us to inquire about our availability outside of regular business hours.
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Phone: (345) 769-6230