rare disease


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rare disease

See Orphan disease.
References in periodicals archive ?
It provides a holistic approach to caring for people with a rare disease and to maximise the available resources for research, innovation and collaboration across the UK to benefit the entire rare disease community.
Dr Alastair Kent OBE, Director, Genetic Alliance UK, Chair, Rare Disease UK (RDUK)
AN ACTION plan is being launched by the Welsh Government today to tackle rare diseases.
Prof Sir John Burn, head of Newcastle University's Institute of Human Genetics, will close the event with a talk about the future of rare disease research.
The Rare Disease centre will be based within a new Institute of Transla-tional Medicine which will be dedicated to developing and implementing groundbreaking treatments, technologies and techniques to accelerate the delivery of personalised healthcare for patients.
The plan, which is the first for Wales, has five areas of work, including empowering those affected by rare disease, identifying and preventing rare diseases, diagnosis and early intervention, coordination of care and the role of research.
She added the objective of celebrating the World Rare Disease Day is to raise awareness among the community and decision-makers on the rare diseases and their effects on patient's lives.
Rare diseases do not distinguish national boundaries; making them a concern to all nations--rich or poor, all races, religions and social affiliations.
According to the organisers of the open day, there are between 6,000 to 8,000 rare diseases that have been documented.
Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), today announced its support of International Rare Disease Day with a series of initiatives meant to call attention to rare diseases as an important public health issue and to improve rare disease education, research, and treatment.
A new law enacted this summer reflects years of advocacy by NORD and the rare disease patient community.