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Monday, August 20, 2018
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Monday, August 20, 2018

Patch.com

$1K Needed To Help Dublin Boy With Rare Disease In Need Of Bike
Patch.com
DUBLIN, CA — A fundraiser held in Dublin last weekend raised several thousand dollars to help buy a special bicycle for a Dublin boy who suffers from a rare genetic disease. The "Wheel for Wheels" fundraiser held at Kolb Park was created to help buy ...

Monday, August 20, 2018

North Bay Business Journal

BioMarin Pharmaceutical's new FDA approval helps those with rare disease eat protein again
North Bay Business Journal
Imagine having to live your life watching every single thing you eat, at every single meal, every single day, because of a rare genetic defect that doesn't allow you to digest protein effectively. Then imagine one day a drug comes along that will ...

Monday, August 20, 2018

fox13now.com

St. George support group focuses on rare disease that causes loss of speech
fox13now.com
ST. GEORGE, Utah — A rare form of dementia that causes patients to lose their ability to speak will be the topic of an upcoming support group in St. George. The free support group for caregivers of those suffering from frontotemporal dementia is being ...

Monday, August 20, 2018

TechCrunch

RDMD attacks rare diseases with data mined from health records
TechCrunch
You wouldn't expect a medical app to get its start as a Snapchat competitor. Neither did video chat startup TapTalk's founder Onno Faber. But four years ago he was diagnosed with a rare disease called neurofibromatosis type 2 that caused tumors ...
Rare-Disease Hackathon Leads to $3M for Health Data Startup RDMDXconomy
A company that calls itself the 'Flatiron Health of rare diseases' and is backed by Mark Zuckerberg, Bill Gates, and ...Business Insider
RDMD raises $3 million in seed funding to accelerate rare disease research, drug developmentNews-Medical.net

all 18 news articles »
Monday, August 20, 2018

Xconomy

Rare-Disease Hackathon Leads to $3M for Health Data Startup RDMD
Xconomy
Xconomy San Francisco —. When tech entrepreneur Onno Faber learned he had an extremely rare genetic disease with no available treatments, he leaned on his tech skills and organized a Silicon Valley “hackathon” in 2017 to dig into his own DNA and ...
RDMD Secures $3 Million in Seed Funding to Drive Patient-Accelerated Drug Development in Rare DiseasesBusiness Wire (press release)

all 3 news articles »
Monday, August 20, 2018

Guest Opinion: Champions supporting patients with rare diseases
Bucks County Courier Times
As one of 30 million Americans living with a rare disease and as a stroke survivor, how a candidate votes on health care issues is a key consideration as I consider who to support in every election. Fifty percent of rare disease patients are children ...

and more »
Monday, August 20, 2018

Guest Opinion: Champions supporting patients with rare diseases
The Intelligencer
As one of 30 million Americans living with a rare disease and as a stroke survivor, how a candidate votes on health care issues is a key consideration as I consider who to support in every election. Fifty percent of rare disease patients are children ...

and more »
Sunday, August 19, 2018

St George News

St. George support group focuses on rare disease that causes loss of speech
St George News
ST. GEORGE — A rare form of dementia that causes patients to lose their ability to speak will be the topic of an upcoming support group in St. George. The free support group for caregivers of those suffering from frontotemporal dementia is being ...

Sunday, August 19, 2018

NRToday.com

Glide family struggles with realities of daughter's rare disease
NRToday.com
GLIDE — Kiah Florence, 10, of Glide, is a fifth-grader at Glide Elementary School and has always been an active youngster, and she especially loves her dancing. In the face of a rare disease that has the potential to leave a child immobile or ...