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Caroline Bologna, Huffington Post
- Oct 20, 2017
- 1 min
Photographer Raises Awareness Of Kids With Rare Diseases In Striking Series
Ceridwen Hughes created a “The Rare Project” ― a series of photos and stories of kids with rare diseases. “I also wanted to inject some beau
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Alex Dale, Labiotech.eu
- Oct 18, 2017
- 1 min
British-Finnish Alliance to Bring Gene Therapy to the Masses
Two European Bio-Tech companies are investigating the suitability of combining the two companies’ technology into one powerful gene therapy.
110
GINA KOLATA, NY Times
- Oct 18, 2017
- 1 min
Gene Therapy Halts a Fatal Brain Disease
Patients with a genetic disease, adrenoleukodystrophy, or ALD, causing brain cell death were successfully treated with gene therapy.
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Diana Kwon, The Scientist
- Sep 1, 2017
- 1 min
CRISPR Restores Muscle Function in Mice
Using CRISPR, researchers have successfully treated congenital muscular dystrophy type 1A (MDC1A), a rare disease that can lead to severe mu
20
Ben Locwin, Genetic Literacy Project
- Sep 1, 2017
- 1 min
Rare genetic diseases can arise from unsuspecting carriers
COMMAD is a syndrome which presents, ocular holes, dense bones, small eyes, large head, albinism, and deafness. A rare example of a disease
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PRWEB
- Sep 1, 2017
- 1 min
Introducing 123Genetix --- A New Non-Profit Organization Planning to Use Predictive Computer Models
123Genetix (www.123genetix.com) is developing a big data/deep learning solution to assist researchers: Develop new hypotheses; Design and ru
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James Radke, Rare Disease Report
- Sep 1, 2017
- 1 min
Senator Orrin Hatch Introduces the OPEN ACT of 2017
The OPEN ACT, introduced by Sen. Orin Hatch of Utah, would provide incentives to pharmaceutical companies to repurpose already approved dru
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Admin
- Sep 1, 2017
- 1 min
Preliminary Phase 2 Data from Spinal Muscular Atrophy Program Presented at CureSMA Conference
PTC Therapeutics (NASDAQ: PTCT) is a global biopharmaceutical company focused on the discovery, development, and commercialization of novel
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ROSE CAHALAN, Alcalde
- Sep 1, 2017
- 1 min
Parents of child with rare GM1 Lysosomal Storage Disease Lead Search for Treatment
When the Bragg family learned their daughter, Clara had GM1, a rare Lysosomal Storage Disease they, like many parents with children with rar
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Admin
- Aug 18, 2017
- 1 min
NIH scientists find rare disease clues in cell’s recycling system
Research carried out on a Niemann-Pick type C1 (NPC1) treatment can lead to a new generation of potential therapies for NPC1 and other simil
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Mathew Shanley, www.raredr.com
- Jul 16, 2017
- 1 min
Rare Disease Community Wins Again with 15th Annual Lift for Life
Uplifting Athletes, a nonprofit organization, aimed at inspiring hope for the rare disease community through sport, has a national network o
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MADISON MILLER, Bellevue Reporter
- Jun 26, 2017
- 1 min
Bellevue teen with cystic fibrosis receives scholarship
Vertex is a global biotechnical company that focuses on developing and commercializing medicines to aid people with serious diseases to lead
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Reid d"Amico
- Jun 26, 2017
- 1 min
Chronic Disease Communities’ Voices Need to Be Heard in the Halls of Power
Chronic disease patients, who invest a great deal of time in the medical system, must apply pressure on legislators to improve access and tr
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ManagedCare
- Jun 26, 2017
- 1 min
One Insurer Wants Real-World Evidence Before Shelling Out $1 Million for a Drug
Insurers are balking at the exorbitant price for a medication whose long-term clinical benefits have yet to be measured.
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