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Presentation by The Broad Institute Presenters: Melanie O’Leary, MS, CGC, Rare Genomes Project, Broad Institute of Harvard and MIT Brian Mangilog, Clinical Project Coordinator, Rare Genomes Project One resource to reference:
Notes: Doesn’t require a physician referral. Offer WGS though only in the U.S. right now. There is an on-line application or call-in. They have a partnership with Quest Diagnostics. Presentation by Dr. Farnaes Presenter: Dr. Lauge Farnaes, Head of Medical Affairs, IDbyDNA and affiliated with the Rady Children’s Institute for genomic medicine One resource to reference:
Presentation by Disability Rights California Presenters: Maria Fernanda Iriarte is a Senior Attorney who is a member of the Legal Clinics Project for Disability Rights California, a non-profit organization that advocates for the rights of persons with disabilities. Her expertise is in the area of public benefits. Ms. Iriarte has a Bachelor of Science in Business Administration from California State University Long Beach and a Juris Doctor degree from Loyola Law School. Raymond Kwong is an advocate with Disability Rights California (DRC) with the Advocacy and Community Engagement (ACE) team. He has been with DRC for 4 years and recently joined the Legal Clinics Project, where he works with attorneys and advocates to provide trainings and legal clinics in the disability communities. Raymond is also involve with the Asians and Pacific Islanders with Disabilities of California, a non-profit that trains young adults to become advocates, and connects families to resources. Two resources to reference:
Make-A-Wish: Granting Wishes To Children With Critical Illnesses (Meeting November 3, 2018)11/22/2018 Hallie Noel, Medical Outreach Manager, Make-A-Wish San Diego |
The CURE brings together a community of extraordinary parents of children with undiagnosed, rare and complex medical conditions, to learn, share and support each other amidst their long journey.
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