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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 statesNew yorkAdvisory committee on heritable disorders in newbornsScreening panelRecommended uniform screening panelCapitol hillRare disease weekAdvisory committeeHeritable 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 ostertagGlobal foundation for peroxisomal disordersGlobal organization for peroxisomal disordersPeroxisome biogenesis disorderZellweger spectrumGlobal foundationPeroxisomal disordersGlobal organizationRare disease weekCapitol hillDisease dayRare 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.

United statesLeonarde kulickiKetan bulsaraRafael azevedoDaniel robertsAlberto marquesUconn john dempseyLuana diniz torminUniversity of goiTina encarnacion uconn health photoBrainstem disorder programAnesthesia associatesUnited nationsUconn health photo tina encarnacionUconn healthUconn health photo lauren woods

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.

United statesVirginia beachNell choiMarie woodLauren stanfordStephanie riordanNational organization for rare disordersChildren nationalRare pediatric disease priority review voucher programEverylife foundation for rare diseasesDrug administrationChildren health insurance programCapitol hillRare diseaseRare disease legislative advocatesEverylife foundation

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 statesSouth carolinaGreg ryanHolly kearlPull thru networkRare disease weekDisease and medical conditionsHuffpost personalRare disease

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