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Monday, June 25, 2018
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Monday, June 25, 2018

Alexion hastens review of successor to rare disease blockbuster Soliris
pharmaphorum
Alexion's rare disease drug Soliris is generating blockbuster-level sales – but the US biotech is rushing through development of a successor amid potential competition and US patent expiry in around three years' time. Connecticut-based Alexion has two ...

Sunday, June 24, 2018

Irish Times

Dublin entrepreneur targeting treatments for rare diseases
Irish Times
Additionally, Amryt commercialises a product called Lojuxta, a drug used to treat a rare, life-threatening disease called homozygous familial hypercholesterolaemia. The disease impairs the body's ability to remove LDL cholesterol, or bad cholesterol ...

Sunday, June 24, 2018

The Globe and Mail

Rare diseases, expensive drugs - Health Canada showdown coming
The Globe and Mail
B.C. Health Minister Adrian Dix wants that plan to include a mechanism to grapple with expensive drugs for rare diseases – a fast-growing cost pressure on the public purse. Conveniently, Health Canada has just provided him with fresh ammunition. Mr ...

Saturday, June 23, 2018

KMVT

Hawaiian boy rides bike across America to raise awareness for rare diseases
KMVT
TWIN FALLS, Idaho (KMVT/KSVT) - Gabriel Low, 17, from Hilo, Hawaii is riding across America to raise awareness for rare diseases. He stopped in Twin Falls on Saturday. "We're doing 3,000 miles from Seattle, Washington to Cleveland, Ohio," he said.

Saturday, June 23, 2018

Rare Disease Report

Top 5 Rare Disease News of the Week—June 17, 2018
Rare Disease Report
The degenerative disease most often develops in pediatric patients with unknown causes and presents with recurring epileptic seizures that resist traditional treatments. In serious cases, the frequency of seizures is reduced by separating the two brain ...

Friday, June 22, 2018

KING5.com

RARE Bears help comfort and connect kids with rare diseases
KING5.com
That is where RARE Bears came to be, and outreach program developed by California nonprofit, RARE Science. RARE Science is a grassroots organization of scientists and sewists. Volunteers make bears that are gifted to children with rare diseases.

Thursday, June 21, 2018

WSOC Charlotte

Drug company steps in to help Charlotte newborn battling rare disease
WSOC Charlotte
CHARLOTTE, N.C. - Channel 9 introduced viewers to Skylar Rodriguez, a 7-month old girl who is battling a rare disease and may only have months to live. ​​Skylar's family heard about a new Food and Drug Administration-approved treatment that could ...

Thursday, June 21, 2018

WSOC Charlotte

Newborn in Charlotte battles extremely rare disease
WSOC Charlotte
"Her kidney wasn't working. Her liver's enlarged. She couldn't breathe on her own," her grandmother, Cindy Washington, told Channel 9 on Wednesday. The newborn was diagnosed with an extremely rare disease known as mucopolysaccharidosis type VII.

Thursday, June 21, 2018

CBC.ca

Alberta runner attempts cross-Canada speed record to fill 'void' in ...
CBC.ca
Dave Proctor will soon dip his white cowboy hat into the Pacific Ocean and start his quest to run to the Atlantic in record time.
Alberta runner attempting cross-Canada speed record to raise money for rare diseasesSaskatoon StarPhoenix

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