I support rare disease day
Rare disease day is here! This is the one day where I can celebrate my uniqueness. With a bunch of other uniquers. Haha! It’s nice to talk to people who have DM and get that ‘uh huh’ and ‘oh yah!’.
Even though the word rare means
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1.(of an event, situation, or condition) not occurring very often.“a rare genetic disorder”
synonyms: infrequent, scarce, sparse, few and far between, thin on the ground,like gold dust, as scarce as hen’s teeth; we still have a large amount of people with rare diseases. I think it’s like 30 million people in the US have a rare disease and there’s around 7, 000 rare diseases on the list. It makes it hard to get funding for research, hard for people to connect with others with their same condition. I read this somewhere (don’t quote me on this) but I think it said like 95% of rare diseases don’t have one FDA approved treatment for their disease. That’s just nuts.
I’m going to link a few places to check out, if you’d like to spread the word, read up, or meet some people like yourself. 🙂
National Organization for Rare Disorders
World Rare Disease Day, The Global Gene Project
Offices of Rare Disease Research
The Voice of Rare Disease Patients in Europe
Eurordis Rare Diseases Youtube Channel
I hope you all are having a great day. I’ll be back to blog soon.
Until next time,
