Designing Effective Rare Disease Registries

by Raymond A. Huml, MS, DVM, RAC and Margaret…

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
Rare Disease Facts and Figures: 1 in 10 Americans is Living With a Rare Disease
The last day of February has been designated as World “Rare Disease Day” to call attention to the public health issues associated with… Continue Reading
World Rare Disease Day 2009 Efforts Underway!
How exciting this week has become. We are proud to be affiliated with children across the country working to create greater public awareness… Continue Reading
Albany High School Students Unite To Raise Money For World Rare Disease Day 2009
Students at Albany High School in Albany, California, are asking classmates, teachers and parents if they can spare some change to help… Continue Reading

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Sep 14

Rare Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

Rare Partnering 2017

September 14 @ 8:00 am - 5:00 pm
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Rare Patient Advocacy Summit

September 15 @ 8:00 am - 4:00 pm
Sep 15

Community Nominated Ceremony and Reception

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Corporate Alliance

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Sep 16

Rare Day of Beauty

September 16 @ 12:30 pm - 4:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm