Action Alert! Urge your Legislator to Support the OPEN ACT!

From RDLA and EveryLife Foundation As you may…

'Denim Jean' Ribbon Unveiled To Promote Rare Disease Awareness
Campaign Brings Together Support from over 90 Corporations, Non-Profit Foundations, Research Institutions, Hospitals and Advocacy Groups;… Continue Reading
Make Rare Disease a Top USA Health Care Priority, Vote Today at – 25 Million+, It is time to care about rare disease.
For the millions and millions of kids and adults, brothers and sisters, moms and dads, families of every sort, friends, doctors,… Continue Reading
A rebuttal – ‘Extraordinary Measures’ wasn’t supposed to be a film about health care reform!
Why isn’t it okay to produce a film that is about perseverance, strength and courage? I have the good fortune of having been in many… Continue Reading
Convergence of Genetic Based Rare Disease Therapies
The recent Burrill Conference underscored the emergence of new personalized medical therapies for children and adults based on genetics,… Continue Reading
Parent Report from the Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories, and Clinical Data Conference
Last week I spent 3 days in Bethesda, Maryland attending a registry “boot camp” with Genetic Alliance and a rare diseases registry… Continue Reading
PBS' To The Contrary With Bonnie Erbe
We are pleased to announce that The PBS program, Bonnie Erbe’s To The Contrary, will be producing a three part documentary-style series of… Continue Reading
Tailoring Treatments for Kids; Perspectives Podcast Series a discussion with Don Lombardi
In treating pediatric patients, doctors and hospitals are often limited by available devices or drugs that have not been optimized for the… Continue Reading

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Sep 14

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