Introduction of Rare Disease Day
There are millions of beings in the world population. Some are healthy, while some are suffering from diseases. However, there are two kinds of diseases affecting the population in the world; curable and non-curable. Curable conditions are those conditions whose origin, symptoms, effects, treatments and prevention are available in the medical research register. Non-curable ones are diseases whose appearance and effects are unknown to the field of medicine. Disease-specific communities, drug administration departments, research departments, and hospitals are in place to improve patients' lives. However, in the case of people with rare conditions, all medical departments work in collaboration towards medical innovations for a better life for the affected.
History of Rare Disease Day
The first Rare Disease Day was observed on 29th Feb 2008. February, a rare month with fluctuating days every four years, is dedicated to indicating rare diseases. Therefore, every year last day of February is celebrated as Rare disease day.
Rare Disease Day 2022 Date
When is Rare Disease Day 2022?
Rare Disease Day for the year 2022 is celebrated/observed on Monday, 28 February.
Rare Disease Day dates for the years 2022, 2023, 2024 and 2025
|2022||Mon||28 Feb||World Rare Disease Day|
|2023||Tue||28 Feb||World Rare Disease Day|
|2024||Thu||29 Feb||World Rare Disease Day|
|2025||Fri||28 Feb||World Rare Disease Day|
Significance of Rare Disease Day
Rare disease day is celebrated to spread awareness to people about rare medical conditions which have no standard treatment and diagnosis. Over 300 million patients suffer from unique health hazards due to a lack of medical assistance and advanced conditions that developed due to emerging lifestyles and habits. It is also to convey our support to the affected individuals.
What is Considered Rare?
A disease that is unique and not in medical research is considered a rare disease. The rare diseases can take years to be diagnosed and may have limited or no treatments. The National Organization for Rare Disease Day(NORD) sponsors rare diseases across the world. It deals and thrives towards the support of individuals with rare conditions since 1987; NORD introduced programs that provide consultations, medications, financial and healthcare assistance with insurance premiums and co-pays.
Causes of Rare Disease
Most of the unique medical conditions are due to genetic disorders, genetic mutations, passing of defective genes to the next generation, and in a few cases, the disease appears for the first time in an individual.
Role of National institutes of Health (NIH)
The National Institutes of Health contains many centres and institutes that are dedicated to the research and development of treatments for various illnesses. The National Center for Advancing Translational Sciences (NCATS), a part of NIH primarily focuses on developing cures and medical solutions to rare and common disease patients through collaborative research programs. Below are few of the programs taken up by NCATS.
- Rare Diseases Clinical Research Network (RDCRN): This program aims to collaborate with multidisciplinary teams for performing academic and clinical research and contribute to the study and effects of nearly 200 rare diseases.
- Therapeutics for Rare and Neglected Diseases (TRND): As the name suggests this program is an initiative for therapeutic research to develop treatments of rare diseases based on metabolic and biological traits of limited patients. Academic scientists, non-profit organizations, pharmaceutical & biotechnology companies work in collaboration to review biological effects and thereby create drugs at a faster pace as a cure.
- Rare Diseases Registry Program (RaDaR): This is an online organization where reserves of information related to diagnosis, research, effects, conditions, medical guidance, testimonials are stored. The reservoir of information acts as a guiding light for the development and data centre of rare diseases. It also gathers the personal characteristics and consent of the patients for research.
- Genetic and Rare Diseases Information Center (GARD): it was brought into existence by the NIH Office of Rare Disease Research in 2002. It is a part of NCATS. It assists the patients, caregivers, policymakers, researchers and public with detailed information about rare diseases. GARD is supported by National Human Genome Research Institute (NHGRI). The online database of GARD is considered a knowledge reservoir as it gathers information from authentic sources; the National Library of Medicine, scientific conferences, support groups, and clinical trials and research. GARD Team provide answers to patient queries both in English and Spanish languages.
Thirty million of the US population are affected by rare conditions. It is tough for the patient as well as the guardian as these diseases incur huge costs for medical tests and multiple consultations for diagnosis. Not to forget the transport and other travel-related expenses. Many times, the patient may even have side effects if the body does not accept drugs for treatment. Lack of progress exhaust the caregivers and patients’ energy, time and spirits.
These diseases mentally drain the energy of the patient as they are discriminated against and isolated due to social stigma. In addition, lack of knowledge about precautions interferes with the normal functioning of the body.
How are Affected People Treated?
Certified professionals separately treat affected systems if the rare condition is a combination of multiple systems disorders.
Example: Marfan syndrome, multiple organ systems are affected; heart, blood vessels, skeleton, eyes, lungs, and skin. In such cases, regular follow-ups are carried separately by an ophthalmologist for vision, orthopedician for a skeletomuscular, cardiologist for heart and neurologist for nervous system functions.
Scientists are in the continuous process of creating medicines for the health improvement of rare disease patients. They perform multiple experiments that lead to discovering medicines for unknown diseases and patient welfare.
When is Rare Disease Day Celebrated?
Rare Disease Day is celebrated on the last day of February every year. It is an indication of the prevalence of unique and unidentified medical conditions in the world.
How is Rare Disease Day Celebrated?
Zebra with white stripes is considered a symbolic representation of uniqueness. Therefore, many display their support to patients and medical professionals by wearing striped shirts.
Blue, green, pink and purple are considered as rare disease day colours, therefore one who loves to support patients, policymakers, health care professionals, guardians and researchers can light homes, buildings and monuments as a signal to help for welfare and discovery of medicine.
Apart from the above, social media posts, webinars, campaigns, fundraising events are carried across the globe on Rare disease day.
The Theme of Rare Disease Day for 2022
The theme of Rare Disease Day 2022 is Share your colours. The theme can be displayed by illuminating dwellings with the rare disease signifying colours. Wearing a striped shirt with a combination of blue, green, pink, purple is a creative way to show your support for the rare disease team.
- Children occupy a higher proportion of rare disease individuals; it is also found that around 30% of them reach heaven before their 5th birthday.
- A rare disease is seen in 1 out of 2000 people.
- There is a risk of misdiagnosis and adverse effects of wrong medication in an affected person.
- 72% of the rare conditions are due to mutations of chromosomes or defective genes
- There are over 7000 rare medical conditions in the world. These are diverse in disorders also differ in affecting each patient. Also, around 250 treatments have been discovered, and approximate 95% of rare diseases have no standard treatment.
- There are more than 500 types of cancers. Pediatric cancer is one of the rare cancers.
- Sometimes a rare condition can only be present in one person, which becomes a challenge for the medical researchers and professionals for the development of drugs to improve the condition.