16p11.2 Genetic Foundation
Also known as 16 P Genetic Syndrome Foundation, 16P GENETIC SYNDROME FOUNDATION, 16p Genetic Foundation, and 16p11.2 Genetic Syndrome Foundation.
16p11.2 Genetic Foundation is an organization in CA offering crisis services, education, healthcare, and youth services. Parent-led nonprofit supporting individuals and families affected by 16p11.2 genetic variants through guidance, education, community, research and clinical care efforts.
- Location
- CA
- Services
- Crisis services, Education, Healthcare, Youth services
- Website
- https://16pfoundation.org/
- EIN
- 883066433
Services
Family Roadmap
Step-by-step guide for families on what to focus on, what support to seek and how to plan at each life stage.
Diagnosis and Testing information
Explains genetic testing, how to read results and next steps, and points to a no-cost testing program run by another organization (Probably Genetic).
Application: Testing is physician-ordered through the Probably Genetic program, which is a separate organization.
Facebook community group
Facebook group for families to connect in real time and share experiences.
Quarterly newsletter
Newsletter with specialized resources, updates and community connections.
Schedule: Quarterly
Resource Library
Curated, searchable collection of studies, educational materials and links to organizations offering services.
Webinar Series: Bridging the Gaps
Recorded webinars on knowledge, care, advocacy, research and support gaps.
Schedule: Held twice monthly; recordings available to watch at your convenience.
Clinical guidelines and resources for clinicians
Summaries and links to GeneReviews, a primary care health supervision guideline and an Occupational Therapy handbook.
2025 Deletion Conference recordings
Recordings available to attendees and virtual registrants; others can donate for access.
Eligibility: Attendees and virtual registrants have access; others may donate.
Application: Log in to your account, or contact the Foundation for help.
Fees: Donation for videos; those for whom cost is a barrier can contact the Foundation.
Questions
What does 16p11.2 Genetic Foundation offer?
16p11.2 Genetic Foundation offers Family Roadmap, Diagnosis and Testing information, Facebook community group, Quarterly newsletter, Resource Library, Webinar Series: Bridging the Gaps, Clinical guidelines and resources for clinicians, and 2025 Deletion Conference recordings.
Where is 16p11.2 Genetic Foundation?
16p11.2 Genetic Foundation is in CA.
How do I contact 16p11.2 Genetic Foundation?
To reach 16p11.2 Genetic Foundation, visit https://16pfoundation.org/.
How do I apply for Diagnosis and Testing information?
Application for Diagnosis and Testing information: Testing is physician-ordered through the Probably Genetic program, which is a separate organization.
When is Quarterly newsletter available?
Schedule for Quarterly newsletter: Quarterly.
When is Webinar Series: Bridging the Gaps available?
Schedule for Webinar Series: Bridging the Gaps: Held twice monthly; recordings available to watch at your convenience.
Who is eligible for 2025 Deletion Conference recordings?
Eligibility for 2025 Deletion Conference recordings: Attendees and virtual registrants have access; others may donate.
Does 2025 Deletion Conference recordings cost anything?
Fees for 2025 Deletion Conference recordings: Donation for videos; those for whom cost is a barrier can contact the Foundation.
How do I apply for 2025 Deletion Conference recordings?
Application for 2025 Deletion Conference recordings: Log in to your account, or contact the Foundation for help.
Last reviewed .