Genetic Alliance

13/08/2025

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.

06/08/2025

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....

25/07/2025

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

25/07/2025

Genetic Testing Action Day, NBS, CMS, and Resilience -

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

24/07/2025

Genetic Testing Action Day. Tell the CMS. Webinar Series on Newborn Screening NASEM Consensus Report. Become a founding advocacy organization for a new platform to id drug targets -

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

21/07/2025

Reminder: Webinar Series on Newborn Screening NASEM Consensus Report -

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....

08/07/2025

Webinar Series on Newborn Screening NASEM Consensus Report -

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....

20/06/2025

Apply to be a clinical site for iHope and contact your representatives about preserving nonprofit's impact -

Genetic Alliance is now accepting applications for new clinical sites to join the iHope Genetic Health (iGH) program, which provides no-cost genomic testing to families from low- and middle-income communities with children suspected of having rare genetic diseases.

18/06/2025

Applications for new iHope Clinical Sites: deadline June 20 -

Genetic Alliance is now accepting applications for new clinical sites to join the iHope Genetic Health (iGH) program, which provides no-cost genomic testing to families from low- and middle-income communities with children suspected of having rare genetic diseases.

11/06/2025

I am helping Tufts recruit for this trial - if you have asthma, check it out! https://www.facebook.com/tuftsmedicine/posts/pfbid0375zndZWAwBvSTPQzkYwp5YajSrLGj2odvCGjophfi24RyBKxgCmRLpi4MEisXeool

09/06/2025

Sign the Bethesda Declaration -

The mission of the National Institutes of Health (NIH) is to “seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.”