Increased Education Crucial to Improving Rare Disease Care, Survey Finds
Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will…
Articles by Shayna Korol
Global Genes, Diversity Coalition Team Up to Advance Health Equity
Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease…
Rare Disease Diversity Coalition Awards $600K to Combat Disparities
The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of…
‘Rare’ Documentary in Kickstarter Campaign to Raise $45K by Oct. 28
A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people…
New Data-sharing Program Aims to Speed Innovation in Rare Diseases
A new U.S. initiative called Rare Disease Cures Accelerator–Data and Analytics Platform — dubbed RDCA–DAP — aims to accelerate…
New Institute Aims to Leave No Rare Disease Patient Behind
A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare…
Group Focuses on Rare Disease Clinical Trial Participation
Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a…
Patients, Caregivers Asked to Help Adira in Choosing Grant Awards
The Adira Foundation is inviting people with neurodegenerative diseases and their caregivers to join a grant proposal review committee. A nonprofit…
‘Running for Rare’: NORD a Charity Partner of 2021 NYC Marathon
The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS…
‘Not Alone in the Dark’: New Guide for, by Caregivers of Children With Rare Diseases
The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that…