Genetic Alliance

10/20/2026

𝗥𝗲𝗾𝘂𝗲𝘀𝘁 𝗳𝗼𝗿 𝗔𝗽𝗽𝗹𝗶𝗰𝗮𝘁𝗶𝗼𝗻𝘀: 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗟𝗮𝗯𝗼𝗿𝗮𝘁𝗼𝗿𝗶𝗲𝘀 𝗖𝗮𝗽𝗮𝗯𝗹𝗲 𝗼𝗳 𝗣𝗲𝗿𝗳𝗼𝗿𝗺𝗶𝗻𝗴 𝗢𝘅𝗳𝗼𝗿𝗱 𝗡𝗮𝗻𝗼𝗽𝗼𝗿𝗲 𝗧𝗲𝗰𝗵𝗻𝗼𝗹𝗼𝗴𝗶𝗲𝘀 (𝗢𝗡𝗧) 𝗟𝗼𝗻𝗴-𝗥𝗲𝗮𝗱 𝗪𝗵𝗼𝗹𝗲 𝗚𝗲𝗻𝗼𝗺𝗲 𝗦𝗲𝗾𝘂𝗲𝗻𝗰𝗶𝗻𝗴

RISE (Rare Insights, Solutions, Empowerment) is a global initiative of Genetic Alliance that works to eliminate barriers to genomic testing by expanding access to clinical-grade genomic sequencing and other high-impact genomic diagnostics for patients with suspected pediatric-onset rare genetic diseases. RISE focuses on individuals from low- and middle-income countries (LMICs) and communities.

Through this Request for Applications (RFA), Genetic Alliance seeks to identify clinical laboratories capable of performing long-read whole genome sequencing (lrWGS) using Oxford Nanopore Technologies platforms. Selected laboratories will receive support to expand access to testing for underserved populations using ONT-based genomic sequencing.

In return, participating laboratories will commit to providing no-cost, clinical-grade genomic testing for undiagnosed patients referred through the RISE clinical network.

This partnership will help expand access to genomic diagnostics for underserved populations while contributing to a global effort to diagnose children with rare genetic diseases and improve clinical care.

𝗔𝗽𝗽𝗹𝗶𝗰𝗮𝗻𝘁 𝗹𝗮𝗯𝗼𝗿𝗮𝘁𝗼𝗿𝗶𝗲𝘀 𝗺𝘂𝘀𝘁 𝗺𝗲𝗲𝘁 𝘁𝗵𝗲 𝗳𝗼𝗹𝗹𝗼𝘄𝗶𝗻𝗴 𝗰𝗿𝗶𝘁𝗲𝗿𝗶𝗮:

1. Provide clinical-grade genomic testing using ONT sequencing workflows; or be in the process of establishing clinical-grade genomic testing using ONT sequencing workflows, with a defined implementation plan and timeline.
2. Hold accreditation or certification from a recognized regulatory or quality standards body (e.g., CLIA, CAP, ISO 15189, or relevant national equivalents).
3. Offer clinician-ordered testing that includes, at minimum, detection and interpretation of single nucleotide variants (SNVs), small insertions and deletions (indels), and copy number variants (CNVs), with interpretation of potentially disease-causing variants and delivery of a clinical diagnostic report.
4. Be able to support associated operational costs if RISE provides sequencing reagents, sample preparation materials, cloud storage, and/or analysis software to enable testing for patients from participating clinical sites.
5. Demonstrate capacity to support testing volumes of at least 50 trios per year.
6. Agree to provide no-cost genomic testing for patients and families referred through the established RISE clinical site network.

𝗔𝗽𝗽𝗹𝗶𝗰𝗮𝘁𝗶𝗼𝗻 𝗧𝗶𝗺𝗲𝗹𝗶𝗻𝗲

- 𝗔𝗽𝗽𝗹𝗶𝗰𝗮𝘁𝗶𝗼𝗻 𝗼𝗽𝗲𝗻𝘀: October 16, 2026
- 𝗔𝗽𝗽𝗹𝗶𝗰𝗮𝘁𝗶𝗼𝗻 𝗰𝗹𝗼𝘀𝗲𝘀: October 30, 2026
- 𝗦𝗲𝗹𝗲𝗰𝘁𝗶𝗼𝗻 𝗶𝗻𝘁𝗲𝗿𝘃𝗶𝗲𝘄𝘀: November 2–13, 2026
- 𝗔𝘄𝗮𝗿𝗱 𝗱𝗲𝗰𝗶𝘀𝗶𝗼𝗻𝘀 𝗮𝗻𝗻𝗼𝘂𝗻𝗰𝗲𝗱: December 1, 2026

𝗔𝗽𝗽𝗹𝘆 𝗵𝗲𝗿𝗲:

This link will take you to a page that’s not on LinkedIn

10/20/2026

We’re excited to officially welcome Miguel del Campo, MD, PhD, as Global Clinical and Scientific Advisor to RISE!

Miguel has helped shape this work since the program's earliest days, including as a clinical partner at the first international site in Tijuana, Mexico. In his expanded role, he’ll help guide our growing global network of clinical sites and laboratory partners and shape what comes next for RISE.

We’re excited to have Miguel’s experience, perspective, and long-standing commitment to families with genetic conditions helping move our work forward. Welcome, Miguel!

Read more 👉 https://lnkd.in/gutNdQJi

📸 Pictured: Dr. del Campo with Brianda and her family at Hospital Infantil de las Californias. Brianda received a diagnosis through exome sequencing, giving her family answers and leading to a remarkable improvement in her quality of life.

09/30/2026

We’re excited to welcome Oxford Nanopore Technologies to RISE, Genetic Alliance's global rare disease genomics network!

Oxford Nanopore will make its sequencing technology available through RISE to expand access to genomic testing for families in under-resourced communities with unresolved genetic conditions.

RISE has provided genomic sequencing to more than 4,000 families across a network spanning 19 countries. Every new partner helps us extend that reach and expand how we can support families

We’re looking forward to what we can build together and, most importantly, to helping more families find answers that can inform their care.

A very warm welcome to ONT! 💫🧬🌍

learn more👉 https://lnkd.in/gC5QKPJx


Sharon Fontaine Terry

09/21/2026

Introducing RISE - Rare Insights, Solutions, Empowerment.

If you've known us as iHope, you'll recognize the people, partnerships, and purpose behind the new name. For more than a decade, this program has worked to expand access to genomic answers for children and families affected by rare and undiagnosed conditions. That mission continues.

But the work has evolved into something bigger: a global, collaborative network of 26 clinical sites, nine laboratories, and two software partners in 19 countries, connecting families, clinicians, and researchers across the diagnostic journey.

Genomic testing remains central to that work. But an answer is not the end of the journey - families may need additional clinical investigation, reanalysis, connection to disease-specific expertise, research opportunities, therapeutic access, and support.

The purpose remains the same. The work has grown.

Together, we RISE. 🌅 rise.geneticalliance.org

Learn more👉 https://lnkd.in/gtmfkvuT

09/13/2026

Something new is about to RISE. 🌅

A new name. A new look. The same commitment to families and children living with rare and undiagnosed conditions, now reflecting a network that has grown far beyond where it began.

Learn more tomorrow.

09/10/2026

RISE, our program that provides no-cost clinical genomic testing to kids in LMICs, has been nominated for the Galien Foundation Inaugural Patient First Award! This is for the 4,000+ kids we have tested and for our 26 clinics and 9 labs in 19 countries. So proud of all of you!!! Tag yourselves!!!

𝟮𝟬𝟮𝟲 𝗚𝗮𝗹𝗶𝗲𝗻 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗙𝗶𝗿𝘀𝘁 𝗔𝘄𝗮𝗿𝗱 𝗡𝗼𝗺𝗶𝗻𝗲𝗲𝘀 𝗔𝗻𝗻𝗼𝘂𝗻𝗰𝗲𝗱
Winners will be announced on Oct 29 during the Galien Patient Summit. See the nominees: https://prn.to/4A7rngI

06/04/2026

Event Name: Seq it Forward Run for Rare 5K + Fun Run

Start Date: June 27, 2026, 8:00am

In Person

Details: Join us for this family-friendly event in support of iHope’s mission to expand access to genetic testing and follow-up care for children and families affected by rare diseases. Enjoy STEM activities for kids, snacks, and cheering on runners and walkers along the beautiful lagoon trail in Del Mar.

Register here: https://events.pacb.com/seq-it-forward-run-for-rare

And/or, please sponsor me - every $100 gets a family clinical genomic testing!!!
https://raceroster.com/events/2026/116104/2nd-annual-seq-it-forward-run-for-rare-5k-fun-run/pledge/participant/45232689

05/09/2026

At the 10th Annual Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases, Sharon Fontaine Terry, President and CEO of Genetic Alliance, delivered the opening keynote: From Silos to Systems – A Vision for the Future of Rare Disease Medicine .

Joining the audience in Berlin remotely after unexpected travel woes, Sharon shared both personal and professional perspectives shaped by her journey as the parent of two children with a rare disease.

Her message: the greatest challenge in medicine is no longer a lack of knowledge, but a failure to connect what we already know. Research, clinical care, data, and lived experience too often remain fragmented, leaving patients and families to bridge the gaps themselves.She challenged the field to move beyond token engagement toward true partnership with patients and families: We are tired of being engaged. We want to be married!

Through initiatives such as , Sharon highlighted models that are already being implemented. Digital infrastructures such as Digital Cabinet, powered by Aretetic Solutions, enable families to manage their own health data and use it specifically for research and care. This shifts control from the system to the people themselves.

Her core message: The necessary tools and concepts already exist. The essential step now is to connect them consistently and advance them together.

Read more 👉 : https://lnkd.in/dWrBUkJq

04/16/2026

Dubai Health joins iHope as the first laboratory partner in the Middle East, marking a significant step toward bringing genomic testing closer to patients and families who need it most.

Dubai Health will be the first international lab partner supporting in-country testing for a clinical site. By reducing the need for cross-border sample shipment, we’re not just improving efficiency, we’re accelerating answers for children with suspected rare genetic diseases.

As part of the growing iHope network which now includes 6 laboratories and 26 clinical sites across 15 countries this collaboration reflects a broader shift toward a globally connected, locally rooted model for rare disease diagnosis.

Placing testing closer to the point of care improves coordination and shortens the time to diagnosis for families who have already waited too long.

We are proud to be part of building a more equitable and scalable future for genomic medicine.

https://www.einpresswire.com/article/906003454/dubai-health-joins-ihope-as-first-laboratory-partner-in-the-middle-east

Illumina Sharon Fontaine Terry Dubai Health

Partnership marks iHope’s first in-country testing arrangement, reducing logistical barriers and accelerating access to genomic diagnosis

04/10/2026

Thank you Rare Disease Advisor for this incredible feature!

Discover how the Genetic Alliance is transforming healthcare and supporting families with rare disease programs.