| Date | Title | Description |
| Sign up to see | Sign up to see | Sign up to see |
| Sep 29, 2026 | Oxford Nanopore joins global rare disease network RISE to expand access to genomic testing | Partnership with RISE will expand access to genomic testing for families with unresolved rare genetic conditions OXFORD, UNITED KINGDOM, September 29, 2026 /EINPresswire.com/ -- OXFORD, England, 29 September 2026 – Oxford Nanopore Technolog... |
| Sep 14, 2026 | RISE: Genetic Alliance Unveils a New Name and Identity for Its Global Rare Disease Genomics Network | RISE — Rare Insights, Solutions, Empowerment — reflects a network that has grown to nine laboratories and 26 clinical sites in 17 countries.
The sun never sets on this network. At any hour, somewhere in the world, a RISE laboratory is seque... |
| Aug 6, 2026 | enGenome and Genetic Alliance Partner to Expand Access to Advanced Genomic Interpretation for Rare Disease | Collaboration will extend access to enGenome’s interpretation platform across the global rare disease genomics network.
We are keen to demonstrate how our technology can support clinical interpretation workflows and contribute to equitable ... |
| Jul 27, 2026 | Lucid Genomics and Genetic Alliance Collaborate to Expand Access to Advanced Genomic Analysis for Rare Disease | Lucid Genomics provides in-kind access to its genomic analysis platform for laboratories participating in global undiagnosed disease genomics program.
By providing our platform in-kind, we hope to help reduce barriers to genomic diagnostics... |
| Jul 24, 2026 | Genetic Alliance Expands Global Genomics Laboratory Network with Three New Partners | Ryan Taft, Genetic Alliance Council
Donate QR Code
Children’s Mercy, SN Genelab, and Xcelom join Genetic Alliance’s global laboratory network
Every laboratory we add to the network brings new expertise, technologies and opportunities for ch... |
| Apr 7, 2026 | Genetic Alliance Appoints Jennifer Troyer, PhD, to Lead Global Genomics | Jennifer Troyer, PhD
Leading Genetic Alliance’s global genomics strategy
iHope demonstrates what is possible when we connect cutting-edge science with families in need of answers.”
— Jennifer Troyer, Ph.D.DAMASAS, MD, UNITED STATES, April 7... |
| Mar 4, 2026 | 3billion Joins iHope Networks As First Laboratory In Asia | iHope: 3000 kids and counting
Joining the world’s largest rare disease patient network to support patients across the globe in resource-limited settings and set diagnostic standards.
iHope is excited to leverage 3billion’s 75-country global... |
| Feb 26, 2026 | Genetic Alliance Expands the iHope Network With Additional Genomics Partner | iHope: Diagnosing Sick Kids
The addition of PacBio to the iHope network will further expand diagnostic access worldwide DAMASCUS, MD, UNITED STATES, February 26, 2026 /EINPresswire.com/ -- The addition of PacBio to the iHope network will fu... |
| Jul 15, 2025 | Helmsley Charitable Trust Awards $500,000 to Genetic Alliance: Global Access to Genomic Testing for Underserved Children | Join iHope Genetic Health
We are expanding rapidly... A diagnosis opens the door to treatment, connection, and hope—and Helmsley’s partnership helps us unlock those doors.”
— Sharon F. Terry, CEODAMASCUS, MD, UNITED STATES, July 15, 2025 /E... |
| Feb 24, 2025 | iHope Genetic Health Hits 500+ Cases, Strengthens Global Network | Join iHope Genetic Health
Donate QR Code
iHope Genetic Health Program marks a milestone in advancing genetic care for underserved populations. DAMASCUS, MD, UNITED STATES, February 24, 2025 /EINPresswire.com/ -- iHope Genetic Health is thri... |
| Aug 19, 2024 | iHope Genetic Health Announces Strategic Partnerships with First Ten Clinical Sites for Global Genetic Testing Network | Join iHope Genetic Health
“iHope that every patient living with a rare disease gets access to diagnosis in time.” Samuel Wiafe Founder/Executive Director, Rare Disease Ghana Initiative, Samuel Wiafe Founder/Executive Director, Rare Disease ... |
| Jul 9, 2024 | Genetic Alliance’s iHope Genetic Health (iGH) Program Launches with SickKids and CHEO | Diagnosing the world's undiagnosed kids
Free testing for undiagnosed children in under-resourced communities
We are excited to strengthen our commitment through this partnership and support children and youth in low and middle income countr... |
| Jun 6, 2024 | iHope shows benefits of genome sequencing across global population of genetic disease patients | Mother and child with a rare genetic disease in Africa
International philanthropic effort provided genomic testing to 1,004 underserved individuals and shows it may reduce health disparities. DAMASCUS, MARYLAND, UNITED STATES OF AMERICA, Ju... |
| May 29, 2024 | Genetic Alliance adds Ryan J Taft and Erin Thorpe to Leadership Team To Accelerate iHope Genetic Health | Ryan Taft, Chief Scientific Officer
iHope Genetic Health program provides comprehensive genetic testing to undiagnosed individuals from underserved communities
I am thrilled to join Genetic Alliance and eagerly anticipate the expansion of t... |
| May 25, 2023 | Travera and Genetic Alliance Join Forces to Expand Access to Innovative Cancer Treatment | Raise Awareness
Travera’s Rapid Therapy Guidance Test offers personalized cancer treatment options: a remarkable turnaround time, supported by a cancer innovation community
The partnership between Travera, Genetic Alliance, and Luna is a te... |
| Feb 20, 2023 | The Impact of Ending the AmazonSmile Program on Nonprofits | Health nonprofits speak out
We got about $3500 a year. That bought a set of dentures for a kiddo. Talk about impact. Simply life-changing.”
— -Mary Fete, ED, National Foundation for Ectodermal DysplasiasWASHINGTON, DC, USA, February 20, 202... |
| Nov 10, 2022 | Sharon Terry Receives the American Society of Human Genetics Advocacy Award | Sharon Terry, President & CEO, Genetic Alliance
Julia Ortega, Genetic Alliance Council
Ryan Taft, Genetic Alliance Council
Genetic Alliance Welcomes Two New Council Members
She is an inspiration to anyone she touches, and her reach has ... |
| Nov 8, 2022 | Natasha Bonhomme receives the Judi Tuerck Newborn Screening Follow-up and Education Award | Natasha Bonhomme, Expecting Health
The Association of Public Health Laboratories honors Genetic Alliance’s Chief Strategy Officer and Expecting Health Founder
It really is an honor to be mentioned in the same sentence as Judi.”
— Natasha Bo... |
| Jul 22, 2019 | LunaPBC is trading company shares for member health data | CEO Bob Kain said the company was born in response to the broad way that consumers were unknowingly giving companies control over their personal health data, coupled with the potential benefit from breaking down data silos to reveal new ins... |
| Jan 22, 2019 | LunaPBC Partners With Genetic Alliance to Drive Medical Discovery | LunaPBC, the founder of LunaDNA, the first community-owned genomic and health data platform, today announced a partnership with Genetic Alliance, a non-profit dedicated to providing ordinary people with powerful tools to transform research.... |
| Jul 2, 2015 | Get My Health Data campaign launches in time for ‘Data Independence Day’ | “Our main thrust is making tools available” to consumers to meet these goals, Terry told MedCity News. The Get My Health Data site, which actually has been online since May, provides instructions on requesting health information and a list ... |
| Nov 15, 2013 | Free the Data’s first move: Opening data for breast cancer research | For decades, one company owned the data for people tested for a gene that is linked to ovarian and breast cancer.
Many scientists believe that the patenting of this gene stunted medical innovation and delayed discoveries that could have hel... |
| Dec 13, 2012 | Expanding tools for clinical research, rare disease network gets Sanofi award | The competition began earlier this year at the Partners in Patient Health Forum in Washington, DC. The challenge required two or more groups to collaborate in order to qualify for the contest and designed to promote sharing of complementary... |
| LunaPBC is trading company shares for member health data | The growing chorus of concern over the way consumer health data is being sold and used has led to the emergence of new models meant to give individuals ownership of their own data. One San Diego startup is trying to create a system where he... |
| Get My Health Data campaign launches in time for ‘Data Independence Day’ | July 4 is upon us, and with that also comes “Data Independence Day,” when consumers are supposed to start asking en masse for copies of their medical records, in hopes of demonstrating to providers, IT vendors and healthcare policy-makers t... |
| Expanding tools for clinical research, rare disease network gets Sanofi award | A patient-centric tool to provide a virtual research network for rare diseases to improve clinical trial recruitment has taken the top prize in an innovation challenge from Sanofi US.
Registries for All Diseases will get $300,000 to create ... |