ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading rare and genetic disease advocacy organization, proudly announces the winners of its inaugural RARE Patient Impact Grant program. Launched at the 2015 Rare Tribute to Champions of Hope, the nonprofit directs $100,000 in financial support to deserving rare disease foundations and patient advocacy groups providing equipment, resources, and support to rare disease patients and their caregivers.
NGLY1 Foundation is one of Global Genes’ 18 grantees. They seek solutions and patient support for NGLY1 families, an extremely rare disorder that is just one of the 118 rare genetic disorders called Congenital Disorders of Glycosylation (CDG). There are only about 150 known cases of CDG in the United States. Our grant made it possible for parents to actively participate in a recent conference while their children received care. This is a massive endeavor for a community caring for kids who are suffering from global developmental delays, liver dysfunction, and regular seizures. Cristina Might, Founder & Executive Director of NGLY1 Foundation, expresses her gratitude, “The grant funding helped ensure the children had proper medical care while parents and caregivers participated in the educational sessions.”
Global Genes is satisfying an advocacy need that should not be rare. Collectively rare diseases affect 30 million Americans and 350 million people worldwide, approximately half of them children. That’s 10% of the human population. Nicole Boice, Founder and Chief Executive Officer of Global Genes is a champion of the RARE Patient Impact Grant program. “We are excited to make these first awards for an underserved community, and are dedicated to growing the grant program, including increasing the funding available to meet the needs of grant recipients each year.”
That’s amazing news to Krista Vasi, Executive Director of Usher Syndrome Coalition, “We are thrilled to be able to offer scholarships to so many new families for this year’s conference. I hope this grant can make a difference for more groups like ours.” The event will include science sessions, family panels, a research Q&A, and lengthy break sessions where patients and caregivers can engage with researchers who are working tirelessly towards a cure. Usher Syndrome is a rare genetic disorder that results in a combination of hearing loss and visual impairment. It is the leading cause of deafblindness.
Amanda Knitter, Global Genes’ Director of Patient Advocacy, was one of the team members who reviewed the 137 grant application totaling $1.4 million in requested funding. “I’m extremely excited that we were able to distribute to such a worthy recipient base, but we need to do more. If Global Genes could grant all of these requests, we would have been able to help rare foundations serve 1.1 million patients and caregivers.”
There is a huge opportunity to support projects critical to the rare community. With 1 in 10 Americans impacted by a rare disease, chances are someone you know is battling silently. Global Genes doesn’t want rare to be an excuse for not caring. We are requesting support from those outside of the rare community in order to increase the awards for the RARE Patient Impact Grant program. Global Genes raised funds for these grants through its international Denim Dash, a weeklong virtual event held from March 19th to 27th. Help us grow this program and increase our giving to RARE Patient Impact Grant recipients each year. Make an online donation or contact Monica Lee Copeland directly to give at a larger level.
Congratulations to the 2016 RARE Patient Impact Grant program awardees that include the following disease communities: 1p36 Deletion Support & Awareness, ADCY5 Mutation, A Foundation Building Strength, Alternating Hemiplegia of Childhood, CADASIL Association, Children’s Interstitial and Diffuse Lung Disease Foundation (chILD Foundation), Friedreich’s Ataxia Research Alliance (FARA), Helping Hands for GAND, Inc., Histiocytosis Association, Inc., Hope for SCD, International FOXG1 Foundation, LHON Project at UMDF, Moebius Syndrome Foundation, National PKU News, NGLY1 Foundation, Pachyonychia Congenita Project, Usher Syndrome Coalition. Learn more about our 2016 grant winners!
Global Genes will accept grant applications for 2017 awards between July 15, 2016 and September 15, 2016. Learn how to apply for a RARE Patient Impact Grant here. Types of projects funded include special programming conference support, disease specific educational resources for schools, adaptive equipment and technology for patients, and micro-grants for early investigative research.
About Global Genes – Allies in Rare Disease
Global Genes is a leading rare genetic disease advocacy organization. We work to eliminate rare disease challenges by building awareness, developing patient-focused educational tools, and funding patient care programs and early investigative research. Recognized worldwide by the Blue Denim Genes Ribbon®, Global Genes is dedicated to connecting the global rare disease community and uniting experts, advocates and patients of all ages. Together, we actively seek support, treatments and cures for the 7,000+ rare diseases and rare genetic disorders that affect 30 million Americans and over 350 million people worldwide.