Yesterday, on the rarest of dates (February 29th), was World Rare Disease Day. (the US webpage is here) (It’s usually celebrated on the last day of February – this year was extra special). I know this post is a day late, but it’s a super important cause. A rare disease has several definitions, depending on where you are. In the US, it is defined as one which affects fewer than 200,000 Americans, while in Europe it is defined as affecting less than 1 in 2000 individuals. Either way, these are extremely rare conditions that most people, unless you have had direct contact with an individual with the disease, have ever heard of. This also means that there is not a lot of research funding and activity going into studying these diseases and looking for treatments and cures. Sometimes they’re called “Orphan Diseases” for this reason. However, despite each individual disease being “rare”, collectively, rare diseases affect millions of people around the world. These individuals, and their families, are some of the most courageous and wonderful people in the world, and deserve to be recognized for their fights and for themselves.
I don’t personally know anyone who suffers from a rare disease (that they have told me about explicitly, so this statement may be false) however I do follow a couple of blogs about kids with rare conditions written by some fantastic parents. One of the first blogs I ever found (and I still follow it enthusiastically, though I’ve never commented), is the story of a young boy named Bertrand, who has a genetic condition that is so rare, he might be the only person in the world with it. I can’t do justice to Bertrand’s story, but please go take a look at his blog, and see how amazing he is for yourselves. The other blog I follow, Little Miss Hannah, is the story of a wonderful young girl named Hannah, who suffered from a rare condition called Gaucher’s Disease. Sadly, Hannah earned her Angel Wings this past December, but her spirit lives on with her whole family, and those of us whose lives were touched by her story. Her family has started a great organization called The Little Miss Hannah Foundation, to reach out to those who have been touched with rare disease. I encourage you to go look at both sites, and learn about the wonderful joy Hannah brought to the world.
Those two stories are just the ones I have had the honor of stumbling across, but there are hundreds, if not thousands of others, just as eye-opening and dare I say it, inspiring. In honor of Rare Disease Day, I wanted to pay tribute to these wonderful people who have opened my eyes to the world of rare diseases. And please, in the comments, leave links to other rare disease blogs and stories. And take some time today, and tomorrow, and every day, to think about those affected by rare disease. The more we know, the more we can help change the world.