Rare Daily Staff
Global Genes today announced it awarded a total of $110,000 to 12 recipients of its 2018 Rare Patient Impact Grant Program, which provides funding to fund projects that will make a tangible difference in the lives of rare patients and caregivers in the United States.
The rare disease patient advocacy organization, which is the publisher of Rare Daily, made individual awards ranging from $5,000 to $15,000. Global Genes created its Rare Patient Impact Grant Program in 2015 and made its first awards in 2016.
Global Genes awarded three grants in innovation. They included grants to:
- Cystic Fibrosis Research for the CFRI CF Quality of Life Counseling program that provide one-on-one counseling for the to address psycho-social issues CF patients and their caregivers face
- The LAM Foundation for the Circle of Hope Transplant Support Program, which educates LAM patients about the transplant process and the importance of tissue donation
- The VHL Alliance for its Health Wellness Coaching Training program, which is designed to help participants coach, engage, and empathize with patients with the goal of empowering patients to actively manage their health by making educated decisions.
Global Genes also awarded nine Rare Patient Impact Grants in the area of support. They included:
- CDG CARE for its 2018 CDG Scientific and Family Conference- Therapeutic Day Care, which facilitates the meeting and collaboration of medical professionals and families to share knowledge and experience, and discuss common issues of patients living with CDG
- The Chordoma Foundation for its Expert Answers Webinar Series, which will feature experts addressing the significant challenges faced by chordoma community members and information about the latest advances in treatments and clinical research
- cureCADASIL for its CADASIL Connection Webinar Series and new CADASIL Care Webinar, a speaker series of researchers and clinicians from the CADASIL community invited to present their work in CADASIL
- Histiocytosis Association to update and expand its Educational Video Series, which provides information about specific types of histiocytosis and the most effective treatment options available
- Noonan Syndrome Foundation for its Noonan Syndrome Foundation Conference, which is an opportunity to educate individuals about the different aspects of Noonan syndrome and the latest knowledge in the field of Noonan syndrome and Rasopathies research
- Phelan-McDermid Syndrome Foundation for its PMSF Angels End of Life Toolkit, a resource to prepare families at the end of their PMS child’s life
- The Progeria Research Foundation for its Progeria Treatment Guidelines Handbook – 2nd Edition, which provides easy access to information ranging from basic health facts and daily care recommendations to detailed medical treatment guidelines
- Translational Genomics Research Institute’s Center for Rare Childhood Disorders for its Hispanic and Latino Families Outreach program, which brings families together in an atmosphere of support and community where an update on the C4RCD’s research is provided
- Usher Syndrome Coalition’s Usher Syndrome in American Sign Language, which will provide American Sign Language translation of its educational video series USH Talks
Eligible organization for the 2018 included support groups and nonprofit organizations that focus on rare disease and are based in the United States. To be eligible, foundations were required to be a member of the Global Genes RARE Foundation Alliance.
The criteria for consideration included a requirement that accepted projects focus on rare disease patients or caregivers, that they be completed in 2018, and that at least 50 percent of the beneficiaries of the project would be from the United States.
January 16, 2018