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Karla je u 19. godini primetila da NEŠTO OZBILJNO nije u redu: "Usred druženja, samo bih ustala i otišla bez reči"! A onda je dobila dijagnozu RETKOG POREMEĆAJA

Karla je u 19. godini primetila da NEŠTO OZBILJNO nije u redu: "Usred druženja, samo bih ustala i otišla bez reči"! A onda je dobila dijagnozu RETKOG POREMEĆAJA
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Arlington Family Raises $400K to Research Cure for Daughter's Disease


March 8, 2021 at 2:30pm
Arlington’s Ellie McGinn and her family recently raised nearly half a million dollars to fund research into Ellie’s rare degenerative brain and spinal cord disease.
Ellie, 12, has lived with LBSL (leukoencephalopathy with brain stem and spinal cord involvement and lactate elevation) for the last 10 years. It affects fewer than 100 people worldwide and currently has no cure. Her family has been actively fundraising for a cure since 2013.
This year’s all-virtual efforts in honor of Rare Disease Day on Feb. 28 drew a total of $400,000 in donations from around the world. Last Wednesday, the McGinn family awarded the money to the Moser Center at the Kennedy Krieger Institute in Baltimore, which is currently developing and testing new drug therapies that could lead to a cure for LBSL. ....

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Fortress Biotech Joins Global Movement to Raise Awareness for Rare Diseases and Supports Rare Disease Day®


Fortress Biotech Joins Global Movement to Raise Awareness for Rare Diseases and Supports Rare Disease Day®
February 26, 2021 08:00 ET
| Source:
Fortress Biotech, Inc.
Fortress Biotech, Inc.
New York, New York, UNITED STATES
NEW YORK, Feb. 26, 2021 (GLOBE NEWSWIRE) Fortress Biotech, Inc. (NASDAQ: FBIO) (“Fortress”), an innovative revenue-generating company focused on acquiring, developing and commercializing or monetizing promising biopharmaceutical products and product candidates cost-effectively, today announced its support for Rare Disease Day® on February 28, an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people living with rare diseases face.
“Fortress Biotech stands with over 25 million Americans living with a rare disease and is a proud sponsor of the National Organization for Rare Disorders’ (NORD®) ....

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Who Will Win The Coveted Rare Beer Crown?


Wednesday, 17 February 2021, 11:15 am
Unusual brews made with seafood, foraged botanicals and
barrel-aged ales are just some of the entries vying to win a
new city-wide beer competition.
Eleven
Wellington-based brewers will take part in the inaugural
Rare Beer Challenge next month to raise awareness of the
300,000 New Zealanders living with a rare disorder for Rare
Disease Day 2021.
“Inspired by the great work of
Rare Disorders NZ, Fortune Favours has challenged other
Wellington brewers to create their own unique brew to
showcase less common techniques and flavours,” says
Shannon Thorpe, founder of Fortune Favours brewery.
In
2020 Fortune Favours brewery and Rare Disorders NZ (RDNZ) ....

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