It’s Rare Disease Day! Tell us the challenges you face having a #RareDisorder

When we talk about the statistics, that 1-in-10 Americans has a rare disease, of which there are about 7,000, what does that mean? To you? While it’s true that rare diseases and disorders affect 30 million in the US alone, to you it probably meant you spent a lot of money, visiting doctor after doctor, trying to find out what was wrong. And you may have been misdiagnosed before getting a MdDS diagnosis, if you did at all.

In a special Rare Disease Day tweetchat, sponsored by NORD and ABC News, we addressed these and other special challenges that the Rare community faces. The moderator was Dr. Richard Besser, Chief of the ABC News Medical/Health Unit, and here’s how it worked. Dr. Besser posted questions on eleven topics, marked T1 through T11. The MdDS Foundation and everyone participating in the chat gave responses marked with a corresponding T-number.

Topics were fired at us about 5 minutes apart for an hour. I wasn’t fast enough to answer every question. How would you have answered? Post your very own response in the comments. Be sure to use the corresponding T-number so we can follow the topic you’re addressing. Here’s Topic 2 through Topic 11 with select responses that I thought were spot-on.










Three of our tweets were Favorited and two were retweeted. One “RT” alone delivered our message on the importance of Support Groups to 9,819 people who’ve likely never heard of MdDS. I’d say this was a very productive awareness-generating event. It will be interesting to see how many new members join our support groups in the coming days.

In the past year, we’ve more than doubled our number of Twitter followers. Let’s keep the momentum going!

None of the links above are live. To see the Foundation’s original tweets with active links, simply visit