Press Releases

Global Genes® Awards 15 Patient Organizations through RARE Patient Impact Grant Program

January 24, 2019

Media Contact:

Geena RussoThe ACE Agency

(860) 919-6850, [email protected]

ALISO VIEJO, Calif. — January 24, 2019 — Global Genes®, a leading rare disease patient advocacy organization, is proud to announce the 2019 RARE Patient Impact Grant recipients. Launched in 2015, this program directs financial support to RARE Foundation Alliance partner organizations and patient advocacy groups providing education, resources, and support to rare disease patients and their caregivers.

Now in its fourth year, the 2019 RARE Patient Grant Program offers funding in three categories, RARE Innovation, Support and Travel. The 2019 grants are awarded to organizations making innovative, timely, and scalable solutions to finding treatments and cures for rare disease patients.

Collectively, rare disease affects 30 million Americans and 350 million people worldwide. The National Institutes of Health estimates that 50 percent of people affected by rare disease are children, making rare diseases collectively, one of the deadliest and most debilitating global health issues.

“The RARE Patient Impact Grant program provides funding and support to high impact projects for the rare disease community that may not otherwise receive it,” explains Angie Rowe, Interim Executive Director of Global Genes. “To date, Global Genes has provided more than $500,000 in grants to help launch small but innovative and scalable projects specific to rare disease patients and caregivers.”

The RARE Patient Impact Grant program is funded by community donations, individual donors, and Global Genes fundraising events. Global Genes is committed to growing this signature program each year by increasing the amount of critical funding available. To get involved in a local event, to donate, or to learn more please visit

Global Genes would like to congratulate 15 RARE Patient Impact Grant recipients:

  • Foundation for Sarcoidosis Research: The Patient Registry Outreach Program (PROP)
  • International Fibrodysplasia Ossificans Progressiva Association: Community Empowerment Through Resiliency Training Program
  • Lipodystrophy United: Lunch with LU
  • National PKU News: Go Low Pro
  • The Global Foundation for Peroxisomal Disorders: Expanding Our Reach: CEU Accreditation for Medical Professionals at the 2019 GFPD Family and Scientific Conference
  • Turner Syndrome Global Alliance (TSGA): The Turner Syndrome Hearing Project
  • CFC International: Understanding Self-Care and Enhancing Family Dynamics Program
  • Children’s Cardiomyopathy Foundation: Family Care Bag Program
  • Cure CMD: Improved Health Through the Optimization of CMD Care Management Publications and Mobile App
  • Fibrous Dysplasia Foundation: All Ears: Conference and Meeting Hearing Assistance for the FD/MAS Community
  • Koolen-de Vries Syndrome Foundation: KdVS Awareness Video
  • The Brain Recovery Project: The Importance of Friendships & Belonging: Teen & Young Adult Only Excursions
  • Alagille Syndrome Alliance: ALGSA Symposium and Scientific Meeting
  • Li-Fraumeni Syndrome Association Inc.: 2019 LFSA Youth Workshop
  • MTM-CNM Family Connection Inc.: 6th biennial MTM-CNM Family Conference

Global Genes will accept RARE Patient Impact Grant applications for 2020 starting May 1, 2019. To learn more about the 2019 RARE Patient Impact Grant awardees and their programs please visit


About Global Genes® – Allies in Rare Disease

Global Genes is a 501(c)(3) nonprofit organization on a mission to connect, empower and inspire the rare disease community. We provide hope for more than 350 million people affected by rare disease around the globe. To date, we’ve educated 6 million people in 100 countries about rare disease, equipped 30,000 patients and advocates with tools and resources, and provided more than $500,000 in support for innovative patient impact programs. This is just the beginning of what we can achieve together. Visit to get involved today.