A STAR Is Born

When Jessica Klein-Foglio’s and Michael…

First RARE Meetup To Be Held In South Orange County
The  first RARE Meetup will be held in the South Orange County area (Southern California) on Thursday, May 31, 2012 from 10:00 a.m. to… Continue Reading
Bike for Kam: Paving the Way for Treatment for Hereditary Inclusion Body Myopathy (HIBM)
In 2004, my physicians in Michigan told me I had no hope.  I was told I would never meet another Hereditary Inclusion Body Myopathy (HIBM)… Continue Reading
HR 5651, the Food and Drug Administration Reform Act of 2012
House FDA User Fee Bill Will Unlock Lifesaving Treatments for Rare Diseases Rare Disease Community Applauds House Energy & Commerce… Continue Reading
PKU: What is Normal?
If you’ve read my blog these last few weeks you know it’s been a crazy time in my world recently. But things seem to be returning to… Continue Reading
Twiggy: Saving a Life for Vascular Ehlers Danlos
On most days, Vascular Ehlers Danlos takes a back seat in my life, thanks to a magical creature continually by my side.   Twiggy.  Twiggy,… Continue Reading
7000 ‘Bracelets for Hope’ Huge Success Due To Donations By Jewelry Designers
The 7,000 ‘Bracelets for Hope’ campaign continues to raise awareness and give hope to families affected by rare disease! With over 700… Continue Reading
Remi Savioz Glut1 Foundation Virtual Run
On Sunday, May 6, 2012, James Dylan’s mom June, along with many other families, will be participating in an important challenge for her… Continue Reading

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