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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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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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CANCELLED - Support Group 7 March 2020 meeting

2/28/2020

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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: 
  • Wash your hands often with soap and water for at least 20 seconds. If soap and water are not available, use an alcohol-based hand sanitizer.
  • Avoid touching your eyes, nose, and mouth with unwashed hands.
  • Avoid close contact with people who are sick.
  • Stay home when you are sick.
  • Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
  • Clean and disinfect frequently touched objects and surfaces.

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
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Save the Dates for 2020 Meeting!

2/28/2020

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Happy New Year! The meeting dates for 2020 are:

March 7 - Cancelled. See post here for more information.
May 2
August 8
November 7
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Support Group Meeting Notes (November 9, 2019)

2/28/2020

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November 2019 Support Group Meeting

9/16/2019

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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
 
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