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New gene therapy consortium seeks to accelerate rare disease research

The new project, Bespoke Gene Therapy Consortium, hopes its work on 8 rare diseases will set the standard and framework to help thousands of others. ....

United States , Courtney Silverthorn , Michael Pirovolakis , Talia Duff , Jocelyn Duff , Julie Gerberding , Terry Pirovolakis , Jeremy Levin , Drug Administration , California Institute For Regenerative Medicine , Foundation For The National Institutes Of Health , Ovid Therapeutics Inc , Bespoke Gene Therapy Consortium , National Institutes , California Institute ,

New gene therapy consortium seeks to accelerate rare disease research

The new project, Bespoke Gene Therapy Consortium, hopes its work on 8 rare diseases will set the standard and framework to help thousands of others. ....

United States , Julie Gerberding , Jocelyn Duff , Jeremy Levin , Talia Duff , Michael Pirovolakis , Courtney Silverthorn , Terry Pirovolakis , Ovid Therapeutics Inc , Foundation For The National Institutes Of Health , California Institute For Regenerative Medicine , Bespoke Gene Therapy Consortium , Drug Administration , National Institutes , California Institute ,

New gene therapy consortium seeks to accelerate rare disease research

The new project, Bespoke Gene Therapy Consortium, hopes its work on 8 rare diseases will set the standard and framework to help thousands of others. ....

United States , Michael Pirovolakis , Talia Duff , Julie Gerberding , Terry Pirovolakis , Courtney Silverthorn , Jocelyn Duff , Jeremy Levin , California Institute For Regenerative Medicine , Ovid Therapeutics Inc , Bespoke Gene Therapy Consortium , Drug Administration , Foundation For The National Institutes Of Health , National Institutes , California Institute ,

Panel: Stakeholder Collaborations Essential to Making Things Happen in Rare Disease Space

Patients and patient organizations, which have detailed insights in the natural history of a rare disease, should be integral, too. ....

United States , Michele Rhee , Jocelyn Duff , Katherine Beaverson , Bo Bigelow , Clinical Trials Transformation Initiative , Apellis Pharmaceuticals , Patient Focused Medicines Development , Rare Disease , Biotech Week Boston , Rare Disease Film Festival , Julia Carpenter Conlin , Focused Medicines Development , Takeholder Collaborations Essential To Making Things Happen In Rare Disease Space ,

These Families Raised Millions To Fund Treatment For Their Kids' Genetic Disorders. It Hasn't Happened.

KCUR
Kim and Nate Fry of Kansas City, Missouri, are raising money to fund research on a treatment for a rare genetic disorder that affects their son, Charlie.
The growing trend of family-funded research concerns some medical ethicists, who say that suggestions to parents that treatments may be imminent can raise thorny ethical issues.
Over the last several years, parents from across the country have appeared on television and news outlets to raise money to develop treatments for their children with rare genetic disorders.
Many of these families, including one from Kansas City, Missouri, have pinned their hopes on one Texas researcher, Dr. Steven Gray of the University of Texas Southwestern Medical Center in Dallas, who claims to be on the verge of treating a number of rare conditions. They ve raised millions of dollars to fund his research, although breakthroughs haven t happened to the extent many had hoped. ....

New York , United States , North Carolina , University Of Texas Southwestern Medical Center , Chapel Hill , Terry Pirovolakis , Laura King Edwards , Phillip Donenberg , Alex Smith Amber , Tay Sachs , Sean Nolan , Jocelyn Duff , Steven Gray , Megan Allyse , Kasey Woleben , National Institutes Of Health , Pizza Hut , Kansas City , Texas Southwestern Medical Center , Mayo Clinic , Taysha Gene Therapies , Amber Freed , Cure For , National Institutes , Good Morning America , Gray Parents ,