Latest News

Tuesday, February 21, 2017

Feb. 28 declared as Rare Disease Day in Alabama
WSFA
Gov. Robert Bentley signed a proclamation Tuesday designating Feb. 28, 2017, as Alabama Rare Disease Day. Though the day falls on the last day of the month, it's recognized by more than 80 nations. Alabama's commemoration will include a number of ...

Tuesday, February 21, 2017

ESPN

Top pro golfers embrace 13-year-old boy in race to cure rare disease
ESPN
Sebastian Velona, 13, attended the Genesis Open to distribute "healing hugs" and recruit pros such as Dustin Johnson to join his fight against a rare ...

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Tuesday, February 21, 2017

Korean Startup 3billion Focuses on Rare Disease Community With DTC Exome Screening Test
GenomeWeb
NEW YORK (GenomeWeb) – Korean startup 3billion is getting ready to offer a direct-to-consumer genomic rare disease screening test to patients in the US who are looking for a molecular diagnosis and haven't been able to obtain one otherwise.

Tuesday, February 21, 2017

Newron Supports Global Rare Disease Day® 2017 and Rett ...
Yahoo Finance
Newron Pharmaceuticals S.p.A. , a biopharmaceutical company focused on the development of novel therapies for patients with diseases of the central nervous ...

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Tuesday, February 21, 2017

Newron Supports Global Rare Disease Day® 2017 and Rett ...
Business Wire (press release)
Newron Pharmaceuticals announced its support of this year's Rare Disease Day® and the Rett community to raise awareness of the importance of.

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Tuesday, February 21, 2017

Two 'unstoppable' mothers honored for efforts to save their children
The Sun Herald
Willow Cannan is living with an extremely rare genetic disease called Multiple Sulfatase Deficiency. It's such a rare disease that there is no treatment available for it. Children that are diagnosed with MSD are not expected to live past the age of 10 ...

Tuesday, February 21, 2017

KYMA

Local vet encourages precautions against rare disease that sickened fifty dogs in Phoenix
KYMA
A dangerous bacteria has spread through nearly fifty dogs in Phoenix, raising concern for pet owners. The disease, leptospirosis, is one that risks spreading from animals to people. Pets love to explore the outdoors. However, owners may want to be ...

Monday, February 20, 2017

The Sun Chronicle

North Attleboro woman trying to gain attention for Rare Disease Day ...
The Sun Chronicle
NORTH ATTLEBORO — A local woman who started an advocacy organization after struggling with her own rare disease wants others to learn more about the ...

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Monday, February 20, 2017

EverythingLubbock.com

Guthrie Teen With Rare Disease Receives Surprise Award
EverythingLubbock.com
LUBBOCK, TX - Shaylee Boger was diagnosed with Pompe disease, an inherited disorder that disables the heart and skeletal muscles. Today she was honored by the Sanofi Genzyme Organization with the Torch award; which recognizes individuals who ...

Monday, February 20, 2017

wivb.com

Local 2-year-old running out of time with rare disease
wivb.com
WILLIAMSVILLE, N.Y. (WIVB) — A local 2-year-old girl is dealing with a rare disease. Doctors told the family there's not enough research and they're still trying to find the best treatment for her. The family says her health is getting worse the ...