Making Waves

The U.S. Food and Drug Administration has chosen…

A Mom Brokers Treatment For Her Twins’ Rare and Fatal Illness
Bucking Scientific Convention, Ms. Hempel Gets Researchers From Different Fields to Share Data on Potential Therapy By AMY DOCKSER MARCUS… Continue Reading
Unexpected Medical Diagnostic Journey – A Father’s Story
June is quickly approaching and with that comes the 3rd anniversary of “Paige’s sickness” and the beginning of a medical journey I… Continue Reading
Collaboration is key in rare disease research!
KTVU-TV 2, the leading evening news in the San Francisco Bay Area, today reported on Addi and Cassi Hempel, identical twins affected by a… Continue Reading
California Life Sciences Day 2009 – Meetings at California State Capital In Sacramento
The Children’s Rare Disease Network and Global Genes Project had the opportunity to represent rare disease patient advocates at the… Continue Reading
A Tax-Free Savings Plan For Disabilities – ABLE Act Update
Legislation in Congress seeks to allow the disabled and their families to create tax-exempt savings accounts for future care-related… Continue Reading
Survey says: Misdiagnosis of rare diseases is common
No doubt many of you reading the above thought, “Well, I could have told you that!” Here’s a statistic: The  of 5,980 people about… Continue Reading
Cherry Red Spot – Telltale Sign of Neurometabolic Disorders
I received a call today at The Hide and Seek Foundation from a woman who’s cousin’s seven month old son, Ben, has been displaying… Continue Reading

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