News - Page 4 of 168 - NORD (National Organization for Rare Disorders)

April 8, 2022

TOPIC: Press Releases, Patients & Members, Advocacy

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

Posted 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

April 4, 2022

TOPIC: Patients & Members, Rare Disease Day

Rare Disease Day and the Spotlight on NORD Member Organizations

Posted by Rohan Narayanan

Rare Disease Day Recap

Rare Disease Day took place on February, 28, 2022 and successfully raised awareness for the 7,000+ rare diseases that impact over 300 million people globally. NORD is proud to partner with EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international campaign that shines a light on rare diseases… Read More

Tags: Rare Disease Day, NORD, Rare Diseases, rare disease, congenital hyperinsulinism, LBSL, sickle cell disease, TBRS, disease, Members, CACNA1A, VCP, SCN2A, Sarcoidosis, PCD, PFIC, Recurrent Respiratory Papillomatosis, Telomore

March 30, 2022

TOPIC: NORDPod

From Pain To Purpose: Kari Luther Rosbeck

Posted by Valaree DonFrancesco

Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. Kari began her life as a Theater nerd and started her… Read More

Tags: rare disease community, Rare Disease Day, NORD, Rare Diseases, rare disease, Peter Saltonstall, rare cancers, rare cancer, National Organization for Rare Disorders, Mike Porath, The Mighty, telemedicine, Living Rare, rare cancer day, rare cancer coalition, covid-19, telehealth, stupid cancer, matthew zachary, stupid cancer show, voice of rare disease, living strong, community, digital health, NORDpod, Kari Luther Rosbeck, tuberous sclerosis complex

March 16, 2022

TOPIC: NORDPod

Chris Anselmo: The Accidental Muscular Dystrophy Advocate

Posted by Valaree DonFrancesco

Chris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he’d get. After a car crash found him in the hospital on the receiving end of a random diagnosis of having extremely high creatine kinase levels, he was soon… Read More

March 15, 2022

TOPIC: Press Releases

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

Posted 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

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April 8, 2022

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

Posted by Rohan Narayanan

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

April 4, 2022

Rare Disease Day and the Spotlight on NORD Member Organizations

Posted by Rohan Narayanan

Rare Disease Day Recap

March 30, 2022

From Pain To Purpose: Kari Luther Rosbeck

Posted by Valaree DonFrancesco

March 16, 2022

Chris Anselmo: The Accidental Muscular Dystrophy Advocate

Posted by Valaree DonFrancesco

March 15, 2022

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

Posted 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

Topics

Alone we are rare. Together we are strong.®