Press Releases Archives - Page 2 of 34 - NORD (National Organization for Rare Disorders)

April 25, 2022

NORD Pays Tribute to Life and Service of Senator Orrin Hatch

Posted at April 4, 2022 04:14 pm by Rohan Narayanan

April 25, 2022, Washington DC—-The National Organization for Rare Disorders (NORD) today issued a statement of tribute to the life and service of the late Senator Orrin Hatch (R-UT), who passed away over the weekend.

“Over his many years in Congress, Senator Hatch demonstrated his commitment to public health and his concern for the millions of… Read More

Tags: Congress, Orphan Drug Act, Capitol Hill, Senate, Washington DC, Senator Orrin Hatch, Rare Disease Congressional Caucus, Orrin Hatch, US Congress, Utah

April 19, 2022

TOPIC: Press Releases, Registries, Members

The Snow Foundation for Wolfram Syndrome Research and NORD® Launch Natural History Study of Wolfram Syndrome

Posted at April 4, 2022 09:00 am by Valaree DonFrancesco

Clayton, MO, April 19, 2022 —Today, April 19, 2022, The Snow Foundation for Wolfram Syndrome Research and the National Organization for Rare Disorders, Inc. launched the largest-ever study to research Wolfram syndrome, a disease that causes diabetes insipidus, diabetes mellitus, optic atrophy, and deafness as well as various other possible disorders. Wolfram syndrome currently has no cure.

The new study,… Read More

Tags: research, Registry, The Snow Foundation, Wolfram Syndrome

April 8, 2022

TOPIC: Press Releases, Patients & Members, Advocacy

ICYMI: Rare Disease Community Takes Action to Strengthen and Reform Accelerated Approval

Posted at April 4, 2022 09:15 am by Rohan Narayanan

90 Patient Organizations Sign-on to NORD Letters to Secretary Becerra and Congressional Leaders on Strengthening the Accelerated Approval Pathway

April 8, 2022, Washington, DC – This week, the National Organization for Rare Disorders (NORD), along with 90 other patient organizations sent letters to Health and Human Services (HHS) Secretary Xavier Becerra andRead More

Tags: Congress, HHS, Capitol Hill, Senate, Department of Health and Human Services, House, Health and Human Services, accelerated approval, accelerated approval pathways, Xavier Becerra, Congressional Leadership

March 15, 2022

TOPIC: Press Releases

Honoring the Rock Stars of the Rare Disease Community: NORD Announces the 2022 Rare Impact Award Honorees

Posted at March 3, 2022 08:14 am by Rohan Narayanan

NORD’s Rare Impact Award ceremony on June 26 will honor all those making strides to improve the lives of patients and families in the rare disease community

Cleveland, OH, March 15, 2022—Today, the National Organization for Rare Disorders (NORD®) announced the 2022 Rare Impact Award honorees. This list of outstanding individuals, organizations and industry innovators will… Read More

Tags: Rare Impact Awards, Living Rare Living Stronger Patient and Family Form, Living Rare, Living Stronger, Cleveland, Rock and Roll Hall of Fame, Ohio, RIA, Apellis Pharmaceuticals Inc, Empaveli, BridgeBio Pharma, Nulibry, Bristol Myers Squibb, 2seventy bio, Abecma, Enzyvant Therapeutics Inc, Rethymic, Kedrion P BioPharma Inc., Ryplazim, On Target Laboratories Inc., Cytalux, PharmaEssentia Corporation, Besremi

March 3, 2022