Today is Rare Disease Day. As the US site says, alone we are rare; together we are strong.
There are 7000 rare diseases (that we know of). That's a lot of people -- 350 million, at least -- who have a rare disease or know and love someone with a rare disease. The challenges people with rare diseases face are extraordinary. Not only is diagnosis elusive, but without FDA approved treatments, insurers fight every step of the way.
So how can you help?
Go here and raise a hand; if you do, $1 will be donated.
Go here and learn how to contact key decisionmakers.
Or just wear jeans with the Global Genes Project. Like their Facebook page here. And become a partner here.
And if nothing else, please spend a few minutes today reflecting on what it must be like to have a disease nobody's ever heard of, for which there is no known treatment or cure. Look around you. You know someone with a rare disease. Have you ever thought of how tough it must be for them? Well, think of them today. And maybe give them a lift if you can. Jennifer