Rare Disease in the News

WLWT Cincinnati

Boys plans to outpace rare disease in Flying Pig Marathon
WLWT Cincinnati
He is battling a rare and fatal disease known as Duchenne muscular dystrophy, although you wouldn't know it by his friendly and smiling demeanor. Come early Sunday morning, he will have 80 helping hands and many more hearts powering a wheelchair as ...

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Shire profit and revenue up on rare disease drugs
Shire PLC said profit and revenue climbed in the first quarter, thanks to strong sales of several rare disease medicines and its blockbuster pill for attention-deficit hyperactivity disorder, or ADHD. The Dublin-based drugmaker said net income rose 2 ...
Shire chief shrugs off shareholder protestsFinancial Times
Shire - Q1 sales up 17%Hargreaves Lansdown
Shire Quarterly Profit Tops Estimates as Drug Sales SoarBloomberg
Seeking Alpha -The Pharma Letter (registration)
all 45 news articles »

Rare disease gene has a key role in chronic hepatitis C infection
Science Daily
ABHD5 stood out because mutations in the gene cause a rare human genetic disease called Chanarin-Dorfman syndrome (CDS) that causes defects in lipid storage, and also because the earlier tests suggested that the gene had an interesting role in lipid ...


Young girl with rare disease dances alongside Brooklynettes on 'Rachael Ray Show'
Audrey Nethery is a 7-year-old girl that hails from Louisville, Kentucky. At 2 months old she was diagnosed with a rare, inherited bone marrow failure syndrome called Diamond Blackfan Anemia. But that doesn't stop her from dancing. On Wednesday, she ...
WATCH: Girl with rare disease gets down with Nets dancersNJ.com

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People Magazine

WATCH: Kentucky Girl with Rare Disease Makes Adorable Appearance on Rachael Ray
People Magazine
Currently, there's no cure for the disease – an inherited bone marrow failure syndrome – but the family has set up a GoFundMe account and hope to raise $50,000 to help find a cure. All proceeds from the crowd funding site go directly to the DBA foundation.

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Vatican Radio

Vatican cell conference opens with focus on kids, rare disease
Vatican Radio
In her opening remarks, the President of Stem For Life, Dr. Robin Smith, pointed to the growing range of therapies currently under study for the treatment of cancer, autoimmune disorders and rare diseases. The first in the series of conferences was ...
CORRECTING and REPLACING The Vatican Hosts Third International Regenerative Medicine ConferenceBusiness Wire (press release)
Sanford Health Selected for Global Cell-Therapy Event at VaticanPR Web (press release)

all 34 news articles »

Mother creates foundation in daughter's name who died of rare disease
KVIA El Paso
The Aileen Burkett HLH Foundation is still in the works. Herrera said it's a way to cope with her loss and make parents aware. "In this world, you are here to serve," Herrera said. "I want people to know about this disease so they don't go through this ...

Cherry Hill Courier Post

TLC to feature SJ man with rare disease
Cherry Hill Courier Post
GLOUCESTER TWP. - At first, Kenny Krips thought the emails asking him to appear on a new television documentary series were a scam. But after several phone calls with the show's producers, the 45-year-old Glendora resident agreed to appear on TLC's ...

The Tidings

Pope advocates for 'globalization of empathy' in curing rare diseases
The Tidings
“It is fundamentally important that we promote greater empathy in society, and not remain indifferent to our neighbor's cry for help, including when he or she is suffering from a rare disease,” the Pope said April 29. While it's not always possible to ...
Pope Francis on rare diseases: patients should not feel abandonedROME REPORTS TV News Agency
Biden gets papal blessing for his global war on cancerBusiness Insider
Pope's Address to Regenerative Medicine ConferenceCatholic.net
Science World Report -National Catholic Register -Catholic News Service
all 58 news articles »


TLC unites NJ man with woman who shares rare disease
When you are the one in 600,000 that are born with a rare disease, life can feel a bit lonesome at times. Glendora resident Kenny Krips was born with Lamellar Ichthyosis — a rare condition that causes the skin to grow ten times faster than normal ...
Jersey Man With Lamellar Ichthyosis Featured In Documentary: What Is This Rare Skin Disease?Tech Times
'Two In A Million': Sneak Peek of Bobbi and Kenny's Story of Living With a Rare Disease (VIDEO)TVRuckus
South Jersey man to be featured on TLC show 'Two in A Million'PhillyVoice.com

all 4 news articles »