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Top News In Rare Disease Week Today - Breaking & Trending Today

Marit Siverston: Expanded newborn screenings vital (Opinion)

My husband and I knew something was wrong with our son, Brecken, when he crawled and walked late, tripped and fell often, and struggled on stairs. ....

United States , New York , Advisory Committee On Heritable Disorders In Newborns , Screening Panel , Recommended Uniform Screening Panel , Capitol Hill , Rare Disease Week , Advisory Committee , Heritable Disorders ,

Urbana family hopes to bring awareness to rare diseases with their story

URBANA, Ill. (WAND) — One local family is sharing their tragic loss to advocate for others. ....

Chris Ostertag , Global Foundation For Peroxisomal Disorders , Global Organization For Peroxisomal Disorders , Peroxisome Biogenesis Disorder , Zellweger Spectrum , Global Foundation , Peroxisomal Disorders , Global Organization , Rare Disease Week , Capitol Hill , Disease Day , Rare Disease Day ,

UConn Health Marks Rare Disease Day

Doctors at UConn Health Celebrate the Successful Journey of Rare Disease Patient Traveling from Brazil to Connecticut for Innovative Surgery. ....

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'Empowering': Rare Disease Week in DC to draw calls for change – NBC4 Washington

Patients will gather on Capitol Hill to talk to members of Congress and build community as part of Rare Disease Week. ....

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My Baby Was Born Without An Anus. This Is What I Learned About Advocating For My Child.

"This is Rare Disease Week and I learned the hard way . that most medical folks haven t encountered them and simply won’t be able to help when issues arise." ....

United States , South Carolina , Greg Ryan , Holly Kearl , Pull Thru Network , Rare Disease Week , Disease And Medical Conditions , Huffpost Personal , Rare Disease ,