Rare Leader: Deborah Fowler, President and Founder of Soft Bones

The Basics Name: Deborah Fowler Title: President…

Emil Kakkis of Kakkis Everylife Foundation Provides Update on New FDA Division For Rare Diseases
It was exciting to see grassroots politics in action through your 100+ calls in support of our $10 million request to create a specific… Continue Reading
Sibling Support, a note from Don Meyer
Dear SibParent friends — When I wrote the Sibshop curriculum, one thing that made writing the book a bit easier was having a good idea of… Continue Reading
Raising awareness and support for rare disease (just in time for Mother’s Day).
If you’ve waited until the last minute and need a perfect Mother’s Day gift, birthday gift, or “just because,” consider a necklace… Continue Reading
When The ‘Trust Hormone’ Is Out Of Balance
by Alix Spiegel April 22, 2010 – This is a story about a fickle little hormone that plays a large role in our lives. The name of the… Continue Reading
Outsider’s Perspective: NTSAD 2010 Family Conference
This past weekend I attended the National Tay-Sachs and Allied Diseases Annual Family Conference in St. Petersburg, FL, and I don’t think… Continue Reading
Living in a cup is half empty world.
We all have heard of the cup is half empty/full debate. Last week I was meeting with a group of moms and this very topic was discussed. We… Continue Reading
PKS Kids Needs Your Help
Pallister-Killian Syndrome affects fewer than 300 known cases in the world. So, yes, it is a rare disease and we all know how that feels… Continue Reading