rare disease


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rare disease

See Orphan disease.
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- Ireland-based rare and rheumatic disease treatments developer Horizon Therapeutics plc (NASDAQ: HZNP) has launched RAREisCommunity.com, a go-to resource for the more than 350m people around the world living with rare disease, the company said.
Release date- 14082019 - DUBLIN - Horizon Therapeutics plc (Nasdaq: HZNP) today announced the launch of RAREisCommunity.com, a go-to resource for the more than 350 million people around the world living with rare disease.
CZI has made several grants to rare disease initiatives since 2017, including a grant of $1.25 million to Global Genes to create educational materials that help drive the creation of patient-led research groups; a grant of $749,287 to the Rare Genomes Project and the Broad Institute of MIT and Harvard in support of new approaches to the engagement and recruitment of rare disease families; and a grant of $406,640 to the Castleman Disease Collaborative Network for the purchase of software tools and infrastructure in support of patient-led collaborative research networks.
"The Zayed Centre for Research into Rare Disease in Children will enable clinicians and researchers to work side by side in advancing the understanding of rare diseases, identifying new and better treatments and manufacturing innovative medical devices," said Gaspar, who is also chief scientific officer at Orchard Therapeutics, a biotech company dedicated to bringing transformative gene therapies to patients with serious and life-threatening rare diseases.
As a means of sharing resources and information and helping to forge invaluable connections, the National Organization for Rare Disorders[R] (NORD) has announced a meeting for rare disease patients, caregivers and the medical community, which will be held in a different location every year.
While most of us don't know much about rare diseases, The Organization for Rare Diseases India (ORDI), a not for profit organisation committed to addressing the challenges of the rare disease community in India, on Wednesday, announced 'Race for 7', a multi-city run/walk to raise funds and awareness for rare disease patients in India.
More than 400 rare diseases are recorded in Tunisia, she said at a press conference held in Tunis on the Rare Disease Day observed on the last day of February each year.
PATIENTS with rare diseases are being forced to seek medical help in the private sector, reaching deep into their pockets for treatment to avoid long lists in state, the head of the Federation of Rare Diseases, Dr Androula Eleftheriou said on Friday.
The Million Dollar Bike Ride brings together cyclists, volunteers and rare disease advocates to raise funds through pledges and corporate donations.
The organization directly addresses, supports and protects the health and general well-being of people with rare disease.
Rare Disease Day is an annual event that will be celebrated worldwide February 28 and was created to raise awareness and build an understanding of rare diseases, which effects individuals such as Levi Krystosek, age 12, of Ocean Springs.
Using an analysis based on a cohort of 258,235 patients diagnosed with a rare disease during 2017/2018, it focused on hospital visits and activity in the lead-up to diagnosis over the prior 10 years.