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Monday, January 23, 2017

Mix 96

Mix 96 - News - 14 month old from Aylesbury diagnosed with rare ...
Mix 96
Her grandfather has started a campaign to raise awareness of the disease.

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Sunday, January 22, 2017

Houston Chronicle

A pregnant doctor, a rare disease, a tragic turn
Houston Chronicle
Alexander Hicks sprang from the couch and sprinted up the stairs as soon as he heard the thump. It sounded like a stack of heavy books falling off a shelf. Maybe Alyssa, their 5-year-old, had jumped out of bed? She'd been cuddled up in the master bed ...

Sunday, January 22, 2017

PEOPLE.com

Lisa Brown: 34-Year-Old Succumbs to Rare Disease That Caused Her to Starve to Death
PEOPLE.com
In December 2013 doctors at Froedtert Hospital in Milwaukee were finally able to make a diagnosis: Superior mesenteric artery syndrome, a rare digestive-system disorder where part of the small intestine is pinched, blocking food from getting through.

Sunday, January 22, 2017

Local teen with rare disease to receive breakthrough drug | WHEC ...
News 10NBC
A local man living with a rare disease will soon get treatment that could help keep him alive longer...

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Saturday, January 21, 2017

Daily Mail

Ex-model Lisa Brown starving to death from rare disease
Daily Mail
Lisa Brown, 34, from Wisconsin dropped from 145 lbs (left) to 77 lbs (right) because of a rare condition where two arteries 'pinch' her intestines and leave her unable to keep food down. After three years of chronic pain, Lisa said she's done fighting.

Friday, January 20, 2017

Niagara Falls Review

Rare diseases subject of panel discussion
Niagara Falls Review
Eric Mariglia has organized a conference to raise awareness about rare diseases facing Canadians. He is photographed at Brock University on Wednesday, January 18, 2017. (Julie Jocsak/ St. Catharines Standard/ Postmedia Network) ...

Friday, January 20, 2017

Times of Fort Erie

Rare diseases subject of panel discussion
Times of Fort Erie
Eric Mariglia has organized a conference to raise awareness about rare diseases facing Canadians. He is photographed at Brock University on Wednesday, January 18, 2017. (Julie Jocsak/ St. Catharines Standard/ Postmedia Network) ...

Friday, January 20, 2017

The Denver Post

Family's struggle with Batten disease mirrors the journey of others fighting rare diseases
The Denver Post
Julia Vitarello, left, plays with daughter Mila Makovec, 6, and her brother Azlan Makovec, 2, at their home in Boulder County on Friday. Mila Makovec has been diagnosed with Batten disease, a rare terminal neurodegenerative disorder with no known cure.

Friday, January 20, 2017

Welland Tribune

Rare diseases subject of panel discussion | Welland Tribune
Welland Tribune
Eric Mariglia has organized a conference to raise awareness about rare diseases facing Canadians. He is photographed at Brock University on Wednesday, ...

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Friday, January 20, 2017

mHealthIntelligence.com

Newest ResearchKit Study Focuses on a Rare Disease
mHealthIntelligence.com
Newest ResearchKit Study Focuses on a Rare Disease. Penn Medicine's mHealth project targets sarcoidosis, an inflammatory condition that can cause organ damage. Researchers hope the digital health platform will help them connect with patients and find ...