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When: Friday July 16, 2021, 2PM-2:45PM PT Where: Via Webinar (Email CureUndx@gmail.com to receive webinar link) Kim M. Hager, LICSW and Maria Martinez Calderon, LMHC Children’s Friend, Inc. Holding onto Hope: Finding Practical Ways of Getting Support 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. When: Saturday 6 March 2021 10:30AM – 11:45AM PT Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Shikha O’Brien, Director of Business Development, Rare Genomics Institute RareWear Program and Patient Research Services [pro-bono re-analysis] Presentation by Certified Healing Touch Presenter: Lisa Thompson, RN, Certified Healing Touch Practitioner, Licensed Massage Therapist, and Nurse at Rady Children’s Hospital San Diego One resource to reference:
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:
When: Saturday August 8, 2020, 10AM - 12PM PT Where: Via Webinar (Email sdusfg@gmail.com to receive webinar link) Maria Fernanda Iriarte, Senior Attorney Social Security Disability Insurance and Supplemental Social Security Income, An attorney discussion When: Monday July 27, 2020, 11AM - 12PM PT Where: Via Webinar (Email sdusfg@gmail.com to receive webinar link) Katie Golden-Grant, MS, LGC Research Genetic Counselor Lead, University of Washington MyGene2 and UDN: The Value of Genetic Data Sharing |
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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