Rareshare News Articles

Online survey for AI tool, updated disease summaries, importance of community participation.

Participate in a AI user survey, see our recently updated disease summaries and visit your RareShare community.

RareShare is online again.

Read about some of the key challenges faced by virtually all rare disease patients.

Chromosomal positioni information and naming conventions can be somewhat obscure. Here's a quick guide to help understand how the names are derived.

RareShare is looking for stories that can be posted in its newsletter or which can be used in its podcast series.

Rare disease patients in the U.S. are encouraged to participate in a National Organization for Rare Diseases (NORD) research study intended to capture data on how rare diseases impact life, ranging from healthcare access and treatments to emotional, social and financial difficulties. 

A call to action for Rare Disease Day.

Rare diseases are more common than you may think, and RareShare taps into AI.

Support for clinical Trials Advancing Rare disease Therapeutics (START) program to accelerate drug and biological products for rare diseases.

Rare disease parents are invited to particpate in a paid survey.

Getting to a correct diagnosis for a rare disease can be a years long ordeal known as the "Diagnostic Odyssey." Help University of North Carolina Greensboro researchers compile survey results from real patients by participating in an online survey.

Join a study investigating challenges and experiences of families with a child having a rare disease or undiagnosed medical condition

Listen to RareShare's podcast on genetic counseling and rare diseases.

Genetic Counseling and Rare Diseases Podcast produced by RareShare.

Rare Disease Day is February 29th.

For rare diseases, a broad-based approach may be essential in increasing awareness and advocating for better outcomes.

An article posted on the Rare Genomics Institute website discusses the valuable role of physical therapists in pediatric muscular disorders.