Last updated on March 6th, 2023 at 10:13 am
There are many diseases around the world that people are not even aware of. People usually think of these diseases as rare. Whose prevention, disposal and care is also difficult. Every year February 28 (February 29 in leap years) is observed as Rare Disease Day. Whose purpose is mainly to inform people about these diseases and increase awareness about them.
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| Image credit-careindia |
Today is World Rare Disease Day 2023
- When is it celebrated: Last day of February
- February 28, 2023
- Announcement: European Organization for Rare Diseases (Eurodis)
- Celebrated since: 2008
World Rare Disease Day is celebrated on the last day of February since 2008.
Its memory aims to raise awareness and help all people suffering from the so-called rare disease to receive proper diagnosis and treatment on time and, in the long run, guarantee them a better life. We share the video of Lorena, a girl with Phelan McDiarmid syndrome.
Why was this date chosen for rare diseases?
We know that the month of February presents a very special feature and that, depending on the year, it may or may not be a leap year. For this reason, the date was chosen as a symbolic way of linking its rarity to the disease.
Therefore World Rare Disease Day can be celebrated every 28 or 29 February, if it is a leap year.
Theme for 2023
The theme of the World Rare Disease Day 2022 campaign is: “Share your colors”.
What are rare diseases?
Rare diseases are pathologies or disorders that affect a small proportion of the population and usually have a genetic component. They are also known as orphan diseases.
Diseases present a range of characteristic symptoms, and it is very difficult to find out what is their real cause.
These disorders or alterations that patients present must be evaluated by a specialist on a case-by-case basis.
Today about 8% of the world’s population is suffering from them. This translated into numbers corresponding to approximately 350 million people being affected.
Some rare diseases have their own international or world day
There are many rare diseases, which unfortunately affect a considerable percentage of the population. Some of them have their own International or World Day, which aims to sensitize people and call for more research and resources to be able to correctly diagnose these diseases and establish the best treatment.
- January 26: World Kawasaki Disease Day
- February 15: International Angelman Syndrome Day
- August 28: World Turner Syndrome Day
- September 4: World PFAPA Syndrome Day.
- September 7: World Duchenne Awareness Day
- September 17: World Klefstra Syndrome Day
- September 18: World Pitt-Hopkins Syndrome Day
- September 25: International Ataxia Day
- September 28: International Arnold Chiari Syndrome Day
- October 1: International Gaucher Disease Day
- October 7: International Trigeminal Nerve Day
Drugs to fight disease
To combat this disease, patients need to be treated with so-called expensive drugs. They serve to prevent and treat pathology.
Its composition is based on biotechnological compounds which are very expensive to manufacture. For this reason, today more than ever, the cooperation of governments is needed to make these treatments accessible to a greater number of people suffering from these disorders.
European Organization for Rare Disorders (EURORDIS)
Thanks to the European Organization for Rare Diseases (Eurodis), the celebration of the World Day for Rare Diseases began to see more boom and participation from countries such as the United States, Russia, China, and some Latin American countries, who began to become aware. Problems.
In recent years, there has been a greater commitment from these countries, where campaigns, conferences, and awareness programs have been carried out to make people more visible in offering their support to patients suffering from any type of illness with these characteristics. Can be made
Fedor’s role in the fight against rare diseases
The Spanish Federation for Rare Diseases (FEDER) is a Spanish organization that has been playing an important role in the fight against rare diseases for years.
Its main objective has been to promote study and research to find out the causes of these diseases as well as the most appropriate treatment for these patients and to improve their quality of life.
Likewise, thanks to this organization, it has been possible to convey a message to the general public through campaigns, technical means, and social networks to obtain funding and resources for scientific research.
In 2020, Feder launched the campaign for the International Day of Rare Diseases with the slogan “Grow with you, our hope”, which will emphasize the companionable movement that improves the quality of life of the more than three million people who live there every day. Fights for reform. Spain with some rare malformations.
Rare disease?
There are many contributions we can make from our community, school or workplace to celebrate World Rare Disease Day.
One way to contribute is to support patients and family members who are going through the condition, either with a donation of some kind, or through reading documents on the subject yourself or attending talks or seminars. Do it.
Make complete arrangements for the treatment of these diseases in the government hospital. So that the poor family can get its benefit. It is generally seen that rich people go abroad and get their treatment done. At the same time, there are people who are unable to even bear the cost of treatment, and they die due to lack of treatment.
Names of some rare diseases
1. Acanthocytosis chorea – is a neurological disorder that affects many parts of the body.
2. Acromesomelic dysplasia is an inherited disease. Which is known as dwarfism.
3. Acute inflammatory demyelinating polyneuropathy (AIDP) – a disease affecting the nervous system.
4. Acute lymphoblastic leukemia – This is a blood cancer that is specifically related to white blood cells.
5. Addison’s disease (adrenal insufficiency) – The adrenal glands in the body do not make enough of certain hormones, cortisol, and aldosterone.
6. Adrenoleukodystrophy (ALD) – a genetic condition that causes damage to the myelin sheath (membrane). It covers nerve cells in the spinal cord and brain.
7. Acute inflammatory demyelinating polyneuropathy – an autoimmune disease, this disease has been recognized a century ago.
8. Alagille syndrome – a disease related to bile that goes on from inheritance to inheritance.
9. Alkaptonuria (Black urine disease) – an inherited condition resulting in a build-up of homogentisic acid. This is mainly due to protein breakdown.
10. Achalasia cardia – a rare disease that makes it difficult for food and liquid to pass through the swallowing tube that connects your mouth and stomach.
You can find individual stories on the organization’s website.
Similarly, we give you hashtags
#World Rare Disease Day
We invite you to share your experiences on social networks through #RareDiseases.