Today is a day of action to ensure that persons with rare diseases have equitable access to health care and treatment, as well as employment and social possibilities.
Today is Rare Disease Day, a day dedicated to bringing attention to the 300 million people living with rare diseases worldwide. Among the more than 6000 rare disorders that have been identified are Friedreich's ataxia, Friedreich's ataxia, and ARSACS. Establishing equity for those who live with rare diseases is the primary objective of Rare Disease Day awareness campaigns. People with unusual diseases may naturally encounter a number of obstacles in healthcare systems intended for common ailments. This entails having access to treatment, continuous care, and diagnosis. People may experience discrimination while at work or school. Today is a day of action to ensure that persons with rare diseases have equitable access to health care and treatment, as well as employment and social possibilities.
The goal of Rare Disease Day, which is observed on the final day of February, is to increase public awareness of rare diseases and to help those who have them and their families gain better access to medical care and representation.
The day was created in 2008 by the European Organisation for Rare Diseases to increase public awareness of illnesses that go undiagnosed or untreated. That organization claims that while there are numerous days devoted to people with specific diseases (such as AIDS, cancer, etc.), there has not yet been a day to represent those affected by rare diseases. Treatment for many rare diseases is allegedly inadequate, as are social networks to support people with rare diseases and their families.
Because Ehlers-Danlos syndrome is a rare disorder, those who have it are referred to as "medical zebras." Through social media, our identity has now been embraced by people all around the world, strengthening our community.
According to a saying by Dr. Theodore Woodward, "When you hear hoofbeats, think horses, not zebras," the zebra was chosen to stand in for rare disease. and "Don't expect to see a zebra when you hear hoofbeats behind you." Dr. Woodward explained disease diagnosis using this metaphor.
The Council of National Alliances and EURORDIS jointly launched Rare Disease Day for the first time in 2008. The goal was to create a global awareness campaign that would assist raise attention to uncommon diseases. The rarest day, February 29, was selected as the date, and a logo was made.
The 28th of this month is Rare Disease Day. It's quite simple to put off vital things like our health when there are so many things going on in the globe. Because of this, we commemorate the last day of February on our calendars every year to raise awareness of rare diseases.
A rare disease affects one in twenty persons on average at some point in their lives, and there is currently no known solution for most of these conditions. The purpose of Rare Disease Day is to increase public awareness of rare diseases and to motivate researchers and policymakers to consider the needs of people who are affected by rare diseases.
We encourage you to use "Share your colors" and "Light up for Rare" this year. Feel free to translate it into your local tongue and modify it for your national context.
Even if we don't physically meet, there are various ways we can cooperate. One example is participating in a global network of lights to honor Rare Disease Day. You can participate by assisting in the rare disease day lighting up of nearby landmarks and structures (blue, green, pink, and purple). Even your own home can be lit in these hues, and you can encourage your friends and neighbors to follow suit.
Organize interviews with the media (magazines, newspapers, television, and radio) to discuss the situation of patients with rare diseases in your area/country. Plan events centred around rare diseases and the issues crucial to patients in your area (conference, workshops and meetings, walks, demonstrations, sporting events, etc.).
• Arrange a political gathering to lobby your local authorities on behalf of rare diseases.
• Present prizes to those who have made a significant contribution to the cause of sufferers of rare diseases.
• Hold a contest focused on rare diseases (such as an essay writing contest, photo contest, etc.).
• Present flyers, pictures, or other displays that promote awareness.
• Hand out stickers, pamphlets, or badges to people in public places including schools, hospitals, and colleges.
• Make appointments to meet with your local and national authorities, in particular those \sinvolved in research and the diagnosis, treatment, and care.
• Arrange for a local official or politician to visit a center of competence or a research lab for rare diseases.
• Plan specific fundraising campaigns or fundraising activities.
1. Allergic and Immunologic Disorders
2. Cancers
3. Cardiac and Vascular Conditions
4. Endocrine and Metabolic Disorders
5. Gastroenterologic Conditions
6. Hematologic Disorders
7. Infectious Diseases
8. Musculoskeletal Conditions
9. Neurologic Conditions
10. Ophthalmologic Conditions
Approximately 6000–8000 rare diseases are thought to occur globally, and new rare diseases are frequently described in the medical literature. However, there are about 350 rare disorders that afflict 80% of all people with rare diseases.
Congenital defects, viral diseases, rare malignancies, autoimmune disorders, and others are examples of rare diseases. The majority of uncommon diseases only affect adults; about half of them impact children. Hemangiomas, Hirschsprung disease, Gaucher's disease, Cystic Fibrosis, muscular dystrophies, and Pompe disease are a few examples of rare disorders.
