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Patient passports for rare diseases: results of a pilot study Nature

Eileen Thorpe Obituary August 14, 2025 Ranfranz and Vine Funeral Homes

UK must do more on access to rare disease medicines, says ABPI Association of the British Pharmaceutical Industry (ABPI)

Illumina and Genetic Alliance Launch $120 Million Global Initiative to Increase Equity and Improve Outcomes for Families Impacted by Genetic Disease PR Newswire

Building Tools that Promote Health for Patients & Communities Chan Zuckerberg Initiative

EUPATI Guidance for Patient Involvement in Medicines Research and Development: Health Technology Assessment Frontiers

Mental health care for rare disease in the UK – recommendations from a quantitative survey and multi-stakeholder workshop BMC Health Services Research

Sharon Fontaine Terry, President and CEO of Genetic Alliance PBS

An End to the Myth: There Is No Drug Development Pipeline Science | AAAS

What Are You Doing For National Dna Day 2010 National Human Genome Research Institute (.gov)

Rare diseases are a ‘common’ problem for clinicians Royal Australian College of General Practitioners (RACGP)

A quantitative and qualitative analysis of patient group narratives suggests common biopsychosocial red flags of undiagnosed rare disease Orphanet Journal of Rare Diseases

Time to diagnosis and determinants of diagnostic delays of people living with a rare disease: results of a Rare Barometer retrospective patient survey | European Journal of Human Genetics Nature

Enabling Global Clinical Collaborations on Identifiable Patient Data: The Minerva Initiative Frontiers

Committee Report: Advancing the current recommended panel of conditions for newborn screening Nature

Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey Orphanet Journal of Rare Diseases

The role of genetic counsellors in genomic healthcare in the United Kingdom: a statement by the Association of Genetic Nurses and Counsellors Nature

Responsible sharing of biomedical data and biospecimens via the “Automatable Discovery and Access Matrix” (ADA-M) Nature

The RUDY study: using digital technologies to enable a research partnership Nature

Meet Sharon Terry CanvasRebel Magazine

The study is open: Participants are now recruiting investigators Science | AAAS

Rethinking rare diseases The Medical Journal of Australia

Who decides whether your disease gets money for a cure? Utica Observer Dispatch

Sharing your family health history can save your life National Human Genome Research Institute (.gov)

UK mitochondrial donation vote – experts respond Science Media Centre

A chance for the UK to lead the way in rare disease care Politics Home