The rare disease day is celebrated on last day of February every year.
The purpose of the rare disease day is to develop awareness among the general public about rare diseases and health problems faced by rare disease patients.
The rare disease day also helps in getting the attention of health professionals, scientists, researchers and policymakers for taking necessary measures for the alleviation of health problems of rare disease patients.
Historical Background of Rare Disease Day:
The rare disease day was first launched by EURORDIS and its council of national alliances in 2008.
The first rare disease day observed on 29th February on the rare date. Ever since the rare disease held on last day of February, a month having a rare number of days.
In 2008, the day celebrated as a European event. The USA joined the event in 2009. Progressively it became the world event and till 2017 the event celebrated in about 94 countries of the world.
Read Also : World AIDS Day
What is a Rare Disease?
A rare disease is any disease which affects a small percentage of the population.
In Europe, a disease or disorder is defined as rare if it affects less than 1 in 2000 citizens.In the USA a disease or disorder is defined as rare when it affects less than 200,000 Americans at any given time.
What are Characteristics of Rare Disease?
The characteristic list of Rare Disease is as follow.
- A rare disease is often chronic and life-threatening.
- The life of the patient with the rare disease often compromised due to lack or even loss of autonomy.
- A rare disease patient, as well as his/her family, undergo from the high level of pain and suffering.
- The rare disease has no existing effective cure.
- There are about 6000 to 8000 rare diseases.
- Most of the rare diseases affect children.
What Are the Problems faced by Rare Disease Patient?
The list of common problems faced by rare disease patient is as follow.
- Lack of quality information about the rare disease.
- Lack of access to rare disease diagnostic.
- Delayed diagnostic of the rare disease.
- Lack of scientific and research knowledge of the rare disease.
- Lack of appropriate quality healthcare.
- A heavy social consequence of and isolation of rare disease patient.
What Are Causes of Rare Disease?
The exact causes of many rare diseases are still unknown. However, a significant portion is related to changes or mutations in the single gene.
Such diseases are called rare genetic disease. Many of these genetic mutations can pass from one generation to next generation resulting certain rare diseases in a family.
Environmental factors such as diet, exposure to chemicals, smoking can result in rare disease. These factors may directly cause the disease or interact with genetic factors to cause or increase the severity of the rare disease.
What are Examples of Rare Disease?
The examples of rare diseases caused by single gene mutations are:
- Cystic fibrosis, it affects the digestive system and respiratory system.
- Muscular dystrophies, it affects the muscles.
- Huntington disease which affects the brain and nervous system.
The examples of rare diseases caused environmental factors are:
- Uncommon types of anemia caused by vitamin deficiency or medication.
- Mesothelioma is a rare type of cancer, which affects the cell lining and chest cavity.
From Where to Get More Information About Rare Diseases?
National Institute of Health (NIH) which is part of U.S Department of Health and Human Services established ORDR (Office of Rare Disease Research) to help advance research focused on rare diseases.
For more focused information on the rare disease, rare disease names, rare disease list and symptoms or to feedback latest information about the particular rare disease you can visit the official website of NIH.
Rare Disease Day Quotes:
- “A disease may be rare but hope should not be” (Unknown).
- “It’s rare when you have everything going perfectly all at the same time”(Sigourney Weaver).
- “Each contact with a human being is so rare,so precious,one should preserve it”(Anais Nin)
Rare Disease Day Meme-Posters-Wallpapers:
How to Celebrate-What to Do on Rare Disease Day?
- Donate funds to civil, NGOs or social welfare healthcare organizations for the treatment of rare disease patients.
- If you are a policymaker then make an effective implementation policy for rare diseases treatment.
- If you are an official healthcare professional then make necessary arrangements for international cooperation for gaining and sharing knowledge about all rare diseases.
- Meet with isolated rare disease patients and their parents and try to form a network of rare disease patients so that they can share their experiences and best practices.
- Try to provide quality information to rare disease patients and develop general public awareness.
- God forbid, if you are undergoing some rare disease then don’t become disappointed. Stay calm, motivated and updated with the latest medical and scientific research and developments related to curing of rare diseases.
- If you are aware about some best practices about the cure and relieve from any rare disease then share with other patients so that those patients can take benefits from these best practices.
- On the eve of this special day make self-commitments to adopt a healthy lifestyle and developing healthy eating habits.
- Spread words of health awareness among your family, relatives, friends and all peers.
It is a famous saying that health is wealth. If you are a healthy person then believe you are the wealthiest person on the earth and you must be thankful to God.
The care of rare disease patients is an obligation on healthy people. Let us play our role to care the rare disease patients and bring hope in their lives through extending financial, moral, intellectual or any other form of valuable support.
Thanks for your time in reading this post and happy rare disease awareness day on eventofday.