World Rare Disease Day, celebrated on the last day of February, is to create awareness and help all people who suffer from this condition, to receive timely diagnosis and treatment and, in the long run, guarantee a better life.
Why this date?
We know that February has a very particular characteristic and, depending on the year, it can be a leap or not. day was selected as a symbolic way of associating this rarity with the diseases.
So, World Rare Disease Day can be celebrated every February 28 or 29, taking into account if it is a leap year.
What are rare diseases?
Rare diseases are pathologies or disorders that affect a small part of the population and that usually have a genetic component. They are also known as orphan diseases.
Diseases have several particular symptoms, and it is very difficult to diagnose what their true cause is. These disorders or alterations that patients present, have to be evaluated by a specialist, depending on each case.
Today about 8% of the world’s population suffers from orphan diseases. This translated into numbers, corresponds to approximately 350 million population affected.
What are the most frequent rare diseases?
There are many rare diseases, which unfortunately affect a considerable percentage of the population, some of them are:
- Goodpasture’s Disease
- Alport’s Syndrome
- Amyotrophic Lateral Sclerosis (ALS)
- Marfan Syndrome
Orphan drugs to fight the disease
To combat this disease, patients need to be treated with so-called orphan drugs. They serve to prevent and treat the pathology. Based on innovative biotechnological compounds, orphan drugs cost a lot of money for their research & development.
For this reason, today more than ever, the government’s cooperation is needed to make these treatments accessible to people suffering from such disorders.
Organization for Rare Diseases
European Organization for Rare Diseases (EURORDIS)
National Organization for Rare Disorders (NORD)
Thanks to these organization the celebration of World Rare Disease Day began to have more boom and participation from all over the world raising awareness about the problem.
In recent years, the commitment has been greater on the part of theses organization. Campaigns, conferences, and awareness programs are being organized to raise awareness & help those who suffer from these diseases.
How to celebrate World Rare Disease Day?
There are many contributions from our community, school or workplace we can make to celebrate World Rare Disease Day. One way to contribute is to provide support to patients and family members who are going through this situation, either with some kind of donation or simply document yourself on the subject through reading or attending talks or a symposium.
Likewise, we invite you to share your experiences in social networks through the hashtag #ShowYourStripes on #RareDiseaseDay