Hemochromatosis
Recent Research Links Hereditary Hemochromatosis to Joint Diseases and Cancers
According to a story from news-medical.net, a recent study has a found that a hidden disease called hemochromatosis could be a major risk factor for
Rare Patient News. Well Done.
Editor’s Choice: The Government Shutdown’s Affect on Rare Disease Research and a Moyamoya Story
- January 23, 2019
Potential Gene Therapy for Danon Disease Moving to Phase 1 Clinical Trial Soon
European Commission Approves Label Extension of Cystic Fibrosis Drug
Positive Results Announced from Phase 3 Trial for Thrombocytopenia
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Charcot-Marie-Tooth disease
Pharnext Announces Preclinical Trial Results Affecting Onset of Charcot-Marie-Tooth Disease 1A
Pharnext SA, a biopharmaceutical company, recently announced results in a PLOS ONE article entitled “Early short-term PXT3003 combinational therapy delays disease onset in a transgenic rat
Rare Disease
Virtual Repurposing Can Give New Life to Old Drugs
According to a publication from Stat, scientists have high hopes about “virtual repurposing” cutting drug production costs. It could also potentially mean more treatments on
Neuroblastoma
Five-Year-Old Neuroblastoma Patient Travels 700 Miles for Treatment
According to a report from ITV, a five-year-old boy from southern England has made the trip across the Bay of Biscay to Barcelona, Spain, where
Idiopathic Pulmonary Fibrosis
Vogmask Offers a Stylish Face Mask for Those Living with Immunodeficiencies
Vogmask is a San Francisco, California based company founded in 2011. They create stylish facial masks to protect wearers from inhalation of particulate and allergens.
Neuroendocrine Tumor
Sarah’s Closet: The Charity Honoring Bachelor Contestant Elyse’s Sister
This is week three of this season of The Bachelor on ABC, and week three of a patient-related subject highlighted on the show (Colton’s CF foundation,
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The Dos and Don'ts of Exercising with Ehlers-Danlos Syndrome - EDS, Ehlers-Danlos syndrome, Hypermobility, Opinion, Resource
New Discovery in Marine Sponge May Lead to a New Ovarian Cancer Treatment - Cancer, Ovarian cancer, Rare disease, Research
Lisa Deck's Journey Part 2 - Advocacy, Interview, Moyamoya disease, Original
Lisa Deck's Journey Part 1 - Advocacy, Interview, Moyamoya disease, Original, Patient story
10 consejos alimenticios para el Síndrome de Sjögren - Anti-inflammatory diet, Espanol, News, Rare disease, Sjogren's
13 Ehlers-Danlos Syndrome Clues I Missed - EDS, Ehlers-Danlos syndrome, Opinion, Original, Resource
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