Since Sarah Cohen was diagnosed with a rare form of cancer six years ago, she often has been given little chance of survival by doctors. They underestimated her spirit and determination. Sarah defied the odds to collect an honorary diploma Sunday when her Class of 2009 graduated from Carmel High...
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WALLA WALLA — On the day before her graduation from Walla Walla High School, 18-year-old Brittney Woodland spent the afternoon at home. She watched from her front porch as a couple of movers brought a new couch into the living room. “That looks like fun. Can I help?” she said...
DAVENPORT – The Sunshine Foundation, an organization that grants wishes to sick children, will bring to Central Florida 14 young people, mostly children, who were born with progeria, an illness that causes them to age prematurely. The organization’s annual Progeria Reunion will include a picnic and game day at the...
Seven years after the passage of a law advancing the interests of persons afflicted with rare diseases, patients, and other stakeholder groups are still clamoring for government support in terms of adequate funding and implementation of the Integrated Rare Diseases Management Program Strategic Plan. “Persons suffering from rare diseases, sometimes...
In partnership with the Children’s Hospital of Wisconsin and the Genomic Sciences and Precision Medicine Center (GSPMC) at Medical College of Wisconsin (MCW) and sponsored by Orchard Therapeutics, Rare Storytellers Presents: Women and Rare Disease! More than 7,000 rare diseases collectively impact over 350,000,000 people worldwide. Sharing songs and stories unite a strong voice for all...
BELGAUM — He is a big challenge for the medical field. A handicapped boy having innumerous fractures in his body, has been preparing to participate at the national-level swimming competition. Mohin Mustaque Junned, a 12-year-old boy is suffering from a rare disease that causes zero bone calcium. It is called...
SOUTH PLAINFIELD, N.J. – PTC Therapeutics, Inc. (NASDAQ: PTCT) today announced the election of Mary L. Smith to the Company’s Board of Directors. Ms. Smith has previously served as the Principal Deputy Director and CEO equivalent at the Indian Health Service, a $6 billion division of the U.S. Department of Health and Human Services (HHS) and system of hospitals providing...
Ildiko Hammond is exhausted. Not only is caring for her severely disabled daughter a full-time job, it is also financially draining. But yesterday, the Lismore mother of two received some welcome news. Mrs Hammond and about 19,000 other carers of children with profound disabilities will soon qualify for a $550-a-fortnight...
A couple have made a heartfelt appeal for help to get their terminally ill son to America for treatment. Adel and Damien Elliott from Enniskillen were left shattered by the news that both their sons Marc (4) and two-month-old Matthew have the incurable and deadly illness adrenoleukodystrophy, a rare genetic...
Durham, NC – Karen Kump of Elko, Nevada, knew the lump on her right breast should be checked by a doctor when she first noticed it in July 2022. “But my granddaughter was getting married, and I wanted the attention to be on her,” she said. Kump, 78, didn’t know...