Here it is, after midnight again. I often find myself writing at this time of night. Who knows why?
This fact makes me officially a day late for this post, but I truly wanted to share. Friday was World Rare Disease Day. I have two dear friends who “celebrate” this day. One is an adult with a disease called TTP that has almost taken her life and left her with lifelong symptoms. Another is a friend whose beautiful daughter has Joubert Syndrome, a very rare genetic disorder. I believe something like 600 people in the world have it.
These rare diseases do not get the huge media attention that other diseases get…breast cancer, heart disease, diabetes, leukemia. There are no huge donations going to fund research for them because they affect so few people. This means that the chances of finding a cure are much smaller for these rare diseases. But the people who have them are just as deserving as those with more highly publicized disorders.
The Global Genes Project unifies these diseases into one entity and helps promote awareness for all of them. Their symbol is a blue denim “genes” ribbon, because so many of these diseases are genetically based. I’m wearing mine :) According to their website:
“While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined. Despite its size, the community lacks of a unified voice, as only 15% of rare diseases have organizations or foundations providing support or driving research.
It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment, and there are currently less than 400 treatments approved by the FDA for the nearly 7000 rare diseases which have been identified. According to estimates from the NIH, it will take 10,000 years at the current rate of FDA drug approvals to find therapies for all people suffering from rare and genetic diseases.”
It is a worthy organization that brings funding and advocates for these special people and gives them hope of finding a cure–in less than 10,000 years. I hope you will take a moment to look into it.