#63 Rare Disease Day 2017

Released Tuesday, 28th February 2017
Good episode? Give it some love!
image

Today is Rare Disease Day! I attended the National Organization for Rare Disorders' (NORD) event in Hartford, Connecticut’s Legislative Building. I recap the event and feature two interviews, one with Michelle Cotton, a patient advocate and mom of a child with a rare disease. The other interview is with Representative Dave W. Yaccarino, who spoke to me about the legislation's impact on biotech and Rare Diseases. 
Some facts about Rare Diseases, 30 million Americans have a Rare Disease which means 1 in 10 people in America are affected. Over half of those with a Rare Disease are children, and about 30% will not survive past 5 years old (NIH). We are aware of over 7,000 rare diseases and continue to discover more every year. 
Today's event was to raise awareness of Rare Diseases to the public, but most of all to our state legislators as many decision on the state level have major impacts on those in the Rare Disease community. Speakers of the event mentioned in this episode include... 

image

Maddison Shaw, Founder of Maddie's Herd

You can learn more about Bill HB6009, An Act to Create a Permanent Rare Disease Advisory Council. 
Check out DoYourShare.com, a supporting website featuring community stories, an opportunity for those living with a rare disease or those involved in the community to share their story, and ways to get involved in areas ranging from awareness and advocacy to research and donation. 
Please rate, review and subscribe in iTunes, here's a direct link to the podcast's listing. 

Creators & Guests

We don't know anything about the creators of this episode yet. You can add them yourself so they can be credited for this and other podcasts.

Episode Reviews

This episode hasn't been reviewed yet. You can add a review to show others what you thought.

This podcast, its content, and its artwork are not owned by, affiliated with, or endorsed by Podchaser.
Rate Episode

Share This Episode

Recommendation sent

Join Podchaser to...

  • Rate podcasts and episodes
  • Follow podcasts and creators
  • Create podcast and episode lists
  • & much more

Episode Details

Length
28m 11s
Explicit
No

Episode Tags

Do you host or manage this podcast?
Claim and edit this page to your liking.