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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]
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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 When: Saturday May 2, 2020, 2-3PM Where: Via Webinar (Email sdusfg@gmail.com to receive webinar link) Joyce Clark, Family Empowerment Manager Exceptional Family Resource Center: Parent to Parent Support Dear Families, Volunteers, Speakers and Supporters,
Due to the recent developments with the corona virus (COVID-19) and out of caution for our families and communities, we have decided to cancel our support group meeting on 7 March 2020. Here are the recommendations from the San Diego County, Health and Human Services Agency to prevent the spread of respiratory viruses:
These everyday habits can help prevent the spread of several viruses. For further information about COVID-19 and updates, please check the CDC and San Diego County links below. CDC: https://www.cdc.gov/mmwr/volumes/69/wr/mm6908e1.htm San Diego County: https://www.sandiegocounty.gov/coronavirus/ A reminder that we have a private Facebook page for this group. We have been posting Undiagnosed/Rare news and updates daily this month leading up to Rare Disease Day tomorrow 29 February 2020. Our next meeting will be Saturday 2 May 2020 and we will have a speaker from the Exceptional Family Resource Center. Be safe and stay healthy. Caroline Cheung-Yiu Happy New Year! The meeting dates for 2020 are:
March 7 - Cancelled. See post here for more information. May 2 August 8 November 7 When: Saturday November 9, 2019, 2-5PM Where: Ronald McDonald House 2929 Children's Way San Diego, CA 92123 Nicole Coufal, MD PhD, Pediatric Critical Care, Assistant Professor, University of California, San Diego and Rady Children's Hospital Unraveling Unknown Neurological Diseases |
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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