Rareshare News Articles

What is it like to be a parent of a rare disease child? Your role is not limited to being a full-time parent.

Advocacy groups for NGLY-1 deficiency, USP7, MEPAN and GRIN founded by highly motivated parents.

21 rare disease grants awarded to researchers.

We had the pleasure of speaking with Ian Stedman—a lawyer, a father of two, and a rare disease patient and advocate from Toronto. He has Muckle Wells Syndrome, which is a variant of Cryopyrin-Associated Periodic Syndrome, or CAPS. Ian speaks to his experience with the diagnoses, treatment, and general navigation of the health care system as a patient.

Join RAREwithCOVID - A contact registry for Rare Disease patients with COVID-19. 

RAREwithCOVID is open to ANY Rare Disease patient who has or had COVID-19. 

RareShare has recently become aware of a free genetic screening opportunity for neutropenia patients.

Von-Hippel Lindau Syndrome Patients or Caregivers Wanted for Paid Project

RareShare has been contacted by a market research group offering a paid opportunity for Von Hippel-Lindau patients and caregivers in Germany, France or the UK to share their experiences through an online digital journal or a web-cam based interview. 

In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program.

Online survey seeks to find out how COVID-19 is impacting rare disease patients.

• Unrare Challenges
• COVID-19 Impact on Rare Disease Patients
• RareWear Program
• RareShare User Survey
• CBC Podcast Series

Rare disease patients often face minority group challenges.

Multiple reports urge practicing COVID-19 community precautions to prevent exposure of rare disease patients with elevated risks.

Thirteen year-old Bryson has a rare neurodevelopmental disease. Genetic scientists believe they know what's causing it—and think it could be reversed.  Join Bryson's dad—host Keith McArthur—on his search for answers in an 8-part podcast series: Unlocking Bryson's Brain.  Hear a very personal in-depth account of a rare disease family's ordeal in facing the unknown, obtaining a diagnosis and finding hope.  Episodes 1 and 2 were posted on April 14th.

Washington, D.C. February 28, 2020. The Rare Genomics Institute (RG) announces the BeHEARD (Helping Empower and Accelerate Research Discoveries) Initiative, an annual rare disease science challenge providing technology grants for rare disease research. The RG-hosted contest is aimed at accelerating rare disease research and offering new options for millions of patients suffering from ailments that lack effective treatments.

Listen to RareShare’s latest podcast featuring rare disease advocate and patient, Candace Lerman, as she describes how she overcame challenges and doubts to help others. 

No one expects to get a rare disease diagnosis in their mid 20s at the start of a budding career, then get fired for spending too much time away getting treatment, but that’s exactly what happened to Candace Lerman in 2014. Now, almost 6 years later, inspired by her own quest for effective treatment, Candace has retrained as a lawyer and is fighting for new treatment approvals on Capitol Hill. Candace joins us to chat about her experience as a rare disease patient, how she went from losing her job, to succeeding at law school, and about the work she is doing to assist nonprofits in the rare disease space. Candace is also going to share some advice for rare disease patients who want to have a career, and give some tips about keeping your health data safe when taking part in clinical research. www.rareshare.org

One of the diseases featured on the Netflix Diagnosis program was KCNMA1-linked channelopathy, an illness characterized by sporadic seizures and limpness. 

• Diagnosis by Crowdsourcing?
• KCNMA1-Linked Channelopathy Featured in Diagnosis
• DISORDER Comes to San Francisco
• Reach Out and Connect
• RareWear Survey Assesses Monitoring Needs
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