Rareshare News Articles

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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Learn how to sign up for RareShare and join communities so you can connect with other rare disease patients, share your experiences, and support each other.

Rare Genomics Institute's RareWear initiative seeks to connect medical device developers with rare disease patients.

Arvin Gouw, a scientist at Stanford University and a founding member of Rare Genomics Insitute, chats with us about how patients and caregivers can get answers to questions about rare diseases, clinical trials, symptoms, and more, from experts and researchers in the field with the Rare Genomics Task Force. Visit RareShare.org to find your rare disease community.

• Serving the Undiagnosed
• Obtaining a Rare Diagnosis
• Rare Genomics Institute Partners with Genomenon on AI-Based Diagnostic Technology

Stanford UDN diagnoses two brothers with MEPAN Syndrome.

Undiagnosed Diseases Network takes on challenge of rare disease diagnosis.

Our Odyssey, a meet-up for young adults facing challenges from rare or chronic conditions, takes place in Washington, DC on September 8, 2019.

Introduction to the Rareshare website and its features.

Diagnosis, a New York Times produced documentary featuring Yale physician Dr. Lisa Sanders premiers on Netflix on August 16 https://www.netflix.com/title/80201543.  

Hear about rare disease diagnosis, treatment, and quality of life from the perspective of Pulmonary Fibrosis patient Jim Carns, his wife and caregiver Karen Carns, and Dr David Lederer, an expert from the Pulmonary Fibrosis Foundation who is also an Associate Professor at Columbia University. Jim tells us his diagnosis and treatment story, Karen explains what life is like as a caregiver or “care partner,” while Dr Lederer explains the causes of the disease, the treatment options, and upcoming Pulmonary Fibrosis research.

To support research leading to a cure for Friedreich's Ataxia, several fundraising cycling events are being held across the U.S

• Stop Making Sense: Antisense Therapies for Rare Diseases Show Promise
• RGDI Promotes Drug Discovery
• Help RareShare and Rare Genomics better serve you by telling us about areas pertaining to rare diseases that interest you
• Participants rev up their enthusiasm for the Race for 7 Rare Disease Day fun run event
• Rare Genomics iHope Program Podcast