News
Rare Disease Foundations Awarded Nearly $200,000 Through Global Genes’ 2020 RARE Patient Impact Grant Program
Global Genes®, a leading rare disease patient advocacy organization, is proud to announce the 2020 RARE Patient Impact Grant recipients. The 20 recipient foundations will receive funding totaling nearly $200,000 to make a tangible difference in the lives of rare disease patients and caregivers by providing education, resources and support.
“As the RARE Patient Impact Grant program continues to expand, Global Genes is able to provide more organizations with the funding and support needed to advance the research of treatments and cures for the rare disease community,” commented Kimberly Haugstad, CEO, Global Genes. “Since its inception in 2015, the program has provided more than $700,000 in grants to support nearly 100 organizations that may not otherwise receive financial assistance to launch projects related to rare disease.”
Now in its fifth year, the RARE Patient Impact Grant program is an exclusive funding opportunity for rare disease patient organizations that are a part of the Global Genes RARE Foundation Alliance to provide funding and positive impacts to patient communities in need. The 2020 program offers three categories of funding – capacity building, innovation and support. Grants are awarded to organizations making innovative, timely and scalable solutions to find treatments and cures for rare disease patients.
Global Genes would like to congratulate the 2020 RARE Patient Impact Grant awardees:
RARE Capacity Building
CHAMP1 Research Foundation
Cold Agglutinin Disease Foundation
Mast Cell Hope, Inc.
Mission: Cure
Our Odyssey
Scleroderma Foundation
Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.
SATB2 Gene Foundation
Stone Soup Group
T.E.A.M. 4 Travis (Together Ending Asplenia Mortality)
RARE Innovation
Angelman Syndrome Foundation: Angelman Syndrome Clinic Network Database System Project
Congenital Hyperinsulinism International: Centers of Excellence Program
Rare Disease Research and Support at Calvin University: Rare Disease Curriculum and Resource Development
The Myositis Association: Peer-Led Support Certified Training Program
RARE Support
A Nonprofit Group Enriching Lives Inc. (dba Angel Aid Cares): Rare Mothers Resiliency Retreat and Online Training Program
Cure VCP Disease, Inc.: VCP Educational Video
Danny’s Dose Alliance: Emergency Preparedness When Living With Special Needs Educational Event
Littlest Tumor Foundation: NF Young Adult Leadership Program
Team Telomere, Inc.: Team Telomere Family Days
Tennessee PKU Foundation: Pantry Box Delivery Program
Collectively, rare disease affects more than 400 million people worldwide. 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 learn more about the 2020 RARE Patient Impact Grant awardees and their programs, please visit https://globalgenes.org/raregrant. To get involved in a local event, to donate, or to learn more, please visit https://globalgenes.org.
About Global Genes®
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 400 million people affected by rare disease around the globe. To date, we’ve educated more than 18 million people in 134 countries about rare disease, equipped 190,000 patients and advocates with tools and resources, and provided $460,000 in support for innovative patient impact programs. If you or someone you love have a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit the resource hub at Globalgenes.org.