Genetic Alliance

01/14/2026

YES! So good, thank you for your work!!

12/28/2025

Change a Life: $100 for Clinical Genomic Testing for a sick kid - https://mailchi.mp/geneticalliance/change-a-life-100-for-clinical-genomic-testing-for-a-sick-kid Millions of children are undiagnosed and suffering. For just $100 for shipping their sample, they can receive a clinical genome or exome test. Can you help?

10/17/2025

Today is the last day to sign NIH funding letter. -

Building Partnerships Between Communities and ResearchersOctober 21, 20259:30–11:00 AM (space will be available until 12 noon for participants to explore potential synergies)

10/15/2025

Accelerate Research Boston Meeting, Support Maternal and Child Health and NIH Funding - sign today! -

Building Partnerships Between Communities and ResearchersOctober 21, 20259:30–11:00 AM (space will be available until 12 noon for participants to explore potential synergies)

09/29/2025

Oh, no! Who forgot to put the registration link in the newsletter? -

Building Partnerships Between Communities and ResearchersOctober 21, 20259:30–11:00 AM (the room will be available until 12 noon, for participants to explore potential synergies)

09/29/2025

Advocacy and community leaders - join together in Boston -

Building Partnerships Between Communities and ResearchersOctober 21, 20259:30–11:00 AM (the room will be available until 12 noon, for participants to explore potential synergies)

09/27/2025

Sign on to protect research in academic medical colleges -

Dear Colleagues: Thank you to the 164 organizations that to date have signed the community letter to appropriators expressing support for the work of the Joint Associations Group on Indirect Costs (JAG), thanking appropriators for including language in some of the spending bills and reports to date,...

08/25/2025

Resilience: apply to join the founding team -

As we all too well know, the gap between understanding the genes that cause diseases and developing affordable therapies is very large and difficult to navigate. An alternative to traditional methods is to start by identifying rare resilient outliers and then use emerging tools to detect secondary c...

08/13/2025

Survey about in person meeting -

We have yet to receive a commitment from any potential funder to fund a meeting of the network. Because October is only two months away now, we want to assess possibilities.

08/06/2025

NBS Webinar tomorrow. Also, how about people who have pathogenic variants and do not manifest the disease, what can we learn - looking for advocacy organizations to join the Resilience team. -

In 2025, the National Academies of Sciences, Engineering, and Medicine released a consensus report, Newborn Screening: A Vision for Sustaining and Advancing Excellence, with actionable recommendations to strengthen newborn screening as an essential public health service. Genetic Alliance is hosting....

07/25/2025

Today is Genetic Testing Action Day! -

We’re proud to support the campaign to raise awareness about early genetic testing. Mark your calendar for Genetic Testing Action Day on July 25 and download the free Parent Toolkit at StartGenetic.org