Wednesday, February 24, 2016

What is Rare Disease Day?

“Do people actually celebrate having a rare disease?”

 If you asked yourself this questions, don’t worry, you are not the only one. This is one question most people that are not affected by a rare disease have in mind when thinking of Rare Disease Day “celebration”.

If you think of “celebrating” as the birthday party you attended last week or the winning of the world cup by your favorite sports team then you are totally right to ask this question. Because celebrating a birthday and celebrating Rare Disease Day have as much in common as a sun explosion and a toothpick. I don’t know anyone and for that matter I don’t believe there is a person affected by a rare disease on this planet that celebrates the date they found out they were sick. So, “celebrating” in this context is used more with the meaning of “marking the event” or “making the event count” but that sounds long and boring so “celebrating” will have to do.

 “Celebrating” Rare Disease Day is meant for both people affected and not affected by rare diseases. First and foremost, this event tries to make people more aware of the realities of rare diseases.
People with rare diseases are invisible to our society. This is a fact unfortunately and this is why this event cries out:  “Look at us! We exist! Choose to see us!”
It also tries to inform and correct misconceptions like “people affected by rare diseases are few since rare diseases are…well…rare”.
Last but not least, the event tries to get people involved in finding cures or in improving the quality of life for patients with rare diseases in general.

For people affected by rare diseases, this event exists to create bridges, to help patients connect and understand they are not alone, to break isolation. Isolation is the most frequent phenomenon in families with rare disease children. The pain in so strong and so much that people affected feel they can only survive it by absorbing it and lock  it inside themselves. Either they have their friends and family close or not, isolation will set in and it will become a second nature. Breaking isolation is the hardest thing to do after accepting the reality of the disease. This event tries the help people affected by rare diseases to find their voices again by sharing stories, experiences, even pain.

Concluding, the answer to the question from the beginning of the article is “No”. No one celebrates having a rare disease. What we do celebrate and this event is the best occasion for it, is life and the minuscule victories that we achieve over the disease, no matter how scarce.

Rare Disese Day is celebrated every year on the last day of February and is a EURORDIS initiative. This year, Rare Disease Day is on February 29th 2016.

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