Tag: rare disorders

A total of 162 posts are filed under rare disorders
Sempra Energy and Kids Helping Kids Volunteers Supporting Global Genes Project
Sempra Energy Foundation and Southern California rare disease advocates work to raise awareness and volunteer for the Global Genes Project,… Continue Reading
CNN Health – Mom claims in viral blog that disabled child denied transplant
(CNN) — Can a patient be rejected for a kidney transplant based on a developmental disability? A New Jersey mother alleges in her blog… Continue Reading
Rare Stories of Hope and Inspiration – Submit Yours Today
Thank you to all those who have submitted stories of hope and inspiration!  We’ve received many heartfelt stories from parents and… Continue Reading
In A Parents Words – Why RARE Disease Needs ULTRA and FAST Act!
Roy and Reed Zeighami, couldn’t have articulated it better – why the RARE Disease community needs the ULTRA Act/Fast Act of 2012. Please… Continue Reading
Do It Yourself Drug Development, With Some Help! – Wall Street Journal Reports
The effort by two families to buy and develop a drug that holds promise in treating Duchenne muscular dystrophy — described today in the… Continue Reading
Costs of Caring for Children with Rare Disease: Online Survey
The daily routines of those who care for children with rare genetic diseases are challenging.  In his new book, “The Boy in the Moon,”… Continue Reading
75 Days Until World Rare Disease Day 2012!
It’s December 15th and that means only 75 days left until World Rare Disease Day on February 29th, 2012! Other staggering statistics:… Continue Reading