The 29th of February is a very rare day. This only happens once every four year.
The European Organisation for Rare Diseases (EORD) declared and celebrated Rare Disease Day for first time in 2008.
In years without a leap-year, the 28th of February is used.
Rare Disease Day, an annual event that raises awareness about rare diseases and the impact they have on families and individuals around the globe.
Rare Disease Day is a day for patients, patient groups, healthcare professionals and researchers to advocate for rare diseases.
What is a rare disease?
A rare disease affects a smaller number of people than the general population. A disease in the United States is considered rare if fewer than 200 people are affected by it.
Over 7,000 diseases are rare. Rare diseases manifest themselves in many ways. They are chronic, progressive, life-threatening, and debilitating.
Why is Rare Disease Day important?
Rare diseases only affect a few people. But as a category, around 30 million people in the United States live with a rare disease–approximately 1 in 10 people.
Rare Disease Day is a day dedicated to promoting a better understanding amongst the public, healthcare professionals and policymakers of rare diseases. The day also gives individuals and organizations a chance to promote rare diseases, improve access to care and support, and advocate for people with rare diseases.
Impact of Rare Diseases
The majority of rare diseases are chronic and progressive. They can also be debilitating and cause a reduction in quality of life.
Rare disease patients often have difficulty in obtaining the right diagnosis, treatment and care. It is largely due to the lack of awareness and understanding about rare diseases by healthcare professionals, policymakers and the general population.
Advocacy of Rare Diseases
Rare Disease Day is a great opportunity to advocate for rare diseases. This day is a great opportunity for patient organizations, healthcare professionals and people living with rare diseases to raise awareness about rare diseases and advocate on their behalf.
The goal of advocacy efforts is to improve the access to diagnose, treatment and care for people living with rare diseases. The advocacy efforts also promote research and treatment development for rare diseases.
Collaboration on Rare Diseases
Rare Disease Day is an opportunity to share resources, knowledge, and collaborate to better the lives of people affected by rare diseases. Collaboration can improve diagnosis, treatment and care of individuals with rare disease, as well increased research and development new treatments.
The development and research of treatments for rare disorders is crucial to improving the quality of life of people who suffer from a rare condition. The development of treatments for diseases that affect a small number of people and are expensive can make it difficult to develop. Collaboration and advocacy can be used to encourage research and the development of treatments for diseases that are rare.
Rare Disease Day was founded on the belief that all people deserve access to high-quality healthcare and support regardless of their health condition. It is vital that we all play a part in raising awareness about rare diseases, and working towards better treatment and support.
We can all make a difference by advocating for change in policy, funding research, making a contribution, spreading the word on Rare Disease Day, or sharing our stories.