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Archives for: May 6th, 2022

Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council

Written by Rohan Narayanan on May 6, 2022

New council will help educate medical professionals, government agencies, legislators, and the public about rare diseases, research and treatment

May 6, 2022, Atlanta, GA – This week, Governor Brian Kemp signed legislation into law to establish a Rare Disease Advisory Council (RDAC) in Georgia. This advisory body will be comprised of… Read More

NORD Gives Back: Advocacy and Action

Written by Maia Craig on February 3, 2022

Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family… Read More

NORD Gives Back: Rare Disease & Family Life

Written by Maia Craig on January 24, 2022

Being a family member or friend of someone with a rare disease can be a challenging experience. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum to inspire hope and share experiences for… Read More

A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

Written by Rohan Narayanan on September 17, 2021

Shayna had advanced metastatic chondrosarcoma, and her disease progression defied many expert opinions and expectations. In 2015, Shayna was misdiagnosed with scoliosis, and nine months elapsed before she was accurately diagnosed. She was prescribed physical therapy and exercises, which were ineffective in reducing her pain. Early detection is needed in diagnosing chondrosarcoma, and we found a lack of information available about the… Read More