Rare Disease Day is celebrated every year on 28 February. This day becomes the voice of those people across the world who are struggling with rare diseases. This day is not only an opportunity to spread awareness but also to provide support to patients and their families who often remain unseen in society.
What are Rare Diseases
Rare diseases are those that affect very few people. According to the World Health Organization (WHO), such diseases occur in only 5 or less out of 10,000 people. Some of these diseases are congenital, such as Cystic Fibrosis, Huntington’s Disease, and Duchenne Muscular Dystrophy.
Due to lack of awareness about rare diseases, their diagnosis and treatment become difficult. Therefore, Rare Disease Day is an important day to talk about these diseases and educate the society.
History and Significance of Rare Disease Day
Rare Disease Day was started in 2008 by EURORDIS (European Organization for Rare Diseases). This day is celebrated every year on the last day of February. Its purpose is:
- Raising awareness about rare diseases.
- Supporting patients and their families.
- To promote funding for research and treatment
Challenges Faced by Rare Disease Patients
Patients suffering from rare diseases face a variety of challenges:
- Delayed Diagnosis: Sometimes even doctors do not have complete information about these diseases, due to which the diagnosis gets delayed.
- Social Stigma: Many times patients and their families are isolated in the society.
- Lack of Treatment: Many rare diseases have no cure, and the treatments that are available are very expensive.
Conclusion
It is a movement. This day reminds us that every person’s life is precious, no matter what rare disease he or she is suffering from. We all should come together to spread awareness about these diseases and support the people struggling with them. Are you thinking of sharing the story of a per
If we work together to raise awareness, we can help their voices be heard by governments and medical research organizations. The sermon of this day is not just to give information, but to create a society that understands the pain and suffering of every person and helps them.