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Support Group Meeting Notes (May 8, 2021)

5/10/2021

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Presentation by The Broad Institute 

​Presenter
s:
 

 
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: ​
  • RGP CURE talk.pptx 
 
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. 
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March 2021 Support Group Meeting (Webinar)

2/10/2021

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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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Support Group Meeting Notes (Jan 9, 2021)

1/11/2021

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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: 
  • The Power of Healing Touch.ppt 
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Support Group Meeting Notes (Nov 7, 2020)

11/9/2020

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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: 
  • ​Transforming inpatient children’s outcomes by rapid precision medicine .ppt 
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Support Group Meeting Notes (Aug 8, 2020)

8/10/2020

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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: 
  • SSI/SSDI Eligibility & Appeals 
  • Social Security Law List 
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August 2020 Support Group Meeting (Webinar)

7/26/2020

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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
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July 2020 Support Group Meeting (Webinar)

7/26/2020

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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
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COVID-19 Resources

6/30/2020

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Support Group Meeting Notes (May 2, 2020)

6/30/2020

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May 2020 Support Group Meeting (Webinar)

4/9/2020

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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
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