Rare Disease Day is an annual event conducted on the final day of February to promote awareness about rare diseases and increase access to treatment and medical representation for people living with rare diseases and their families. Its has been noted statistically that over 300 million are currently suffering with some incredibly rare diseases and can not free themselves from this encumbrance. This last day of the shortest month of the year was officially declared as the Rare Disease Day in 2008.
Every year the theme of the day is to celebrate awareness among the unaware people and to stand firm with these challenged people and make them ensconced with the society. The most popular slogans upheld in the rallies and social media platforms are Rare is Strong and Rare is Proud. These causes are held to bring awareness also among the policymakers and public by the NIH clinical sponsor center and NCATS for global observance.
Some of the Rarest Diseases in the World
There is a bit of trivia for the awareness of some of the rarest diseases in the world unknown to many humans.
- Stoneman’s Syndrome or Munchmeyer illness, sometimes known as Munchmeyer syndrome, is an extremely uncommon connective tissue ailment that is inherited autosomally. is a condition in which one in every two million persons is affected.
- Syndrome of Alice in Wonderland (AIWS) is a neurological condition in which visual perception, body image, and temporal perception are all distorted. The frequency is presently unknown.
- Hutchinson-Gilford Progeria Syndrome is a hereditary disorder defined by the onset of accelerated aging in childhood. This is a disease that affects people over the age of (HGPS) One in every four million is the frequency…
- Alkaptonuria is a condition in which the body produces too much alkapton.
- Chronic Focal Encephalitis (Rasmussen’s Encephalitis) is a kind of encephalitis that affects a specific area of the brain. Although the actual number of persons afflicted is unknown, it is estimated to be around 1 in 750,000.
This year each person is invited to decorate their houses and lit up their streets with the colors of the rare diseases. This is to show people how the diseases affected families are impacted in their lives. Plus the major cause of the event is to improve access to care and therapies. Reduce this stigma of outcasting these people possessing the rare diseases. Also it is for the government and health institutes to invent ways for the early diagnosis of the rare diseases and reduce time of delay before treatment.