Rare Disease Foundations Awarded Nearly $200,000 Through Global Genes’ 2020 Grant Program

Rare Disease Foundations Awarded Nearly $200,000 Through Global Genes’ 2020 RARE Patient Impact Grant Program

Aliso Viejo, Calif. (December 12, 2019) — 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 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 necessary 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 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 finding 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
• 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 [dba ANGEL AID]: 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.

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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.