Emerging Heroes: What the World is Doing to Provide Support and Spark Joy...
Right now, we could all use a little sunshine. With Coronavirus updates dominating the news cycle, it can become difficult to see past discouraging statistics and unprecedented global announcements....
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RARE Partnership in Advocacy, Funding, and Research for Gastrointestinal...
It’s no secret that rare families are the driving force behind many rare disease diagnoses and drug development efforts. A self-described “mother on a mission,” Debra Melikian has entered into a...
View ArticleSarepta Launches Program to Increase Rare Disease Awareness in K-12 Schools
Rare Daily Staff Sarepta Therapeutics said it launched Rare Lessons, a Sarepta-led lesson planning competition intended to promote the development and implementation of educational materials to...
View ArticleChan Zuckerberg Initiative Awards $1.3 Million to Support the Global Rare...
Chan Zuckerberg Initiative Awards $1.3 Million to Support the Global Rare Disease Community Rare Daily Staff The Chan Zuckerberg Initiative awarded $1.3 million in funding to support the global rare...
View ArticleCytokinetics and Cure SMA Renew Partnership to Advance Education and...
Rare Daily Staff Nonprofit foundation Cure SMA and biotech company Cytokinetics renewed their partnership to increase education, awareness, public policy, and fundraising for spinal muscular atrophy,...
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RARE Patient Advocacy: Forging Connections for Change
Global Genes’ annual RARE Patient Advocacy Summit looked a little bit different this year. Instead of having a blue carpet, you showed off your swag though our virtual photo booth. In place of a...
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SIGNAL Coffee Roasters: A Rare Profile
One thing I’ve found in my years of working as a reporter and communications professional in biotechnology, health, and disease advocacy and fundraising is that rare diseases aren’t so rare. Every one...
View ArticleRareStone and Tencent Collaborate on Service Ecosystem Focused on Rare...
Rare Daily Staff RareStone, formerly Citrine Medicine, and Tencent Holdings, a Chinese digital technology platform company, entered a strategic collaboration memorandum to develop a service ecosystem...
View ArticleManaging Your Mental Health: Rare Disease Affects Beyond the Body
May is Mental Health Awareness Month, and those in the rare community experience a wide array of mental health issues, ranging from anxiety and stress to depression. Patients and caregivers, alike, as...
View ArticleGIST Awareness Day
On GIST Awareness Day, Wednesday, July 13, Dr. Jason Sicklick and his team gather, united in their quest for a cure for SDH-deficient GIST, in memory of Merak Melikian Hatounian. “Merak inspired this...
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