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Genetic Support Foundation Awarded Funding to Identify Patient-Centered Achondroplasia Research Priorities

News / By

We are pleased to announce that the Genetic Support Foundation (GSF) has been approved for a funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support a new project titled “Convening to Identify Patient-Centered CER Priorities of Individuals with Achondroplasia and Families.”  …

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HRSA Grant Progress Update – Year 2 Highlights

Advocacy, Genetic Counseling / By

We’re excited to share the remarkable progress made during year two of our multi-year HRSA Healthy Tomorrows Partnership for Children Program (HTPCP) grant, which funds our continued efforts to expand access to genetic healthcare across the Pacific Northwest. Expanded Patient Care and Community Impact This past year marked significant growth in our ability to serve …

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Who Defines “Health” and What Purpose Does Its Definition Serve?

Advocacy, Disability, Health / By

By Devin Shuman, CGC (she/her) and Andrea Schelhaas, CGC (she/her) *Of note, we purposefully use capital D in Disabled and capital A in Autistic in this text as individuals who embrace disability as a core part of our identities and who are part of the larger Disability community advocating for disability rights and equality.  Today, …

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Pharma’s Role in Practice Guideline Development: Achondroplasia as a Case Study

Advocacy, News / By

By Andrea Schelhaas, Stephanie Meredith and Katie Stoll In November 2021 under the Accelerated Approval Program, the U.S. Food and Drug Administration announced approval of Voxzogo (vosoritide), a drug developed by BioMarin for the purpose of increasing linear growth in children with achondroplasia with open growth plates (individuals who are actively growing). Achondroplasia is the …

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Genetic Exceptionalism: Medicine’s Overreliance on Genetic Testing

Genetic Testing / By

By Devin Shuman, CGC (she/her) We need to talk about genetic exceptionalism. By this I mean, the notion that genetic testing is so groundbreaking that it has replaced the entire diagnostic process for many conditions. Which leaves us with the question of, what do we do when we hit the edge of genetic knowledge and …

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