Global Genes® Expands Grant Program to Support Rare Disease Community Struggling Due to COVID-19

The Global Genes Continuity of Care RARE Patient Impact Grant Program Helps Rare Disease Members Obtain Life-Sustaining Services Disrupted by the COVID-19 Pandemic

Aliso Viejo, Calif. – April 30, 2020 – Global Genes, a leading international rare disease advocacy organization, announced today the expansion of the RARE Patient Impact Grant program to help those members of the rare disease community struggling due to the novel coronavirus and COVID-19 global pandemic. 

The Continuity of Care RARE Patient Impact Grant is an exclusive funding opportunity for RARE Foundation Alliance members as well as rare disease patients, caregivers, and support groups who are not affiliated with a foundation member to connect to a network of telehealth psychosocial counseling services, special education and distance learning teachers, homeschooling tools and resources, and career counseling services.

“We recognize and appreciate the need to respond to an unprecedented public health threat but also recognize that efforts to stop the pandemic are simultaneously causing a disruption of care for many rare disease patients, for whom a gap in treatment or other essential services may pose a very serious threat to their health and wellbeing,” said Kimberly Haugstad, CEO, Global Genes. “Since 2015 we have been providing grants to help improve the lives of everyone affected by rare disease. Expanding this program to help our community under such extraordinary circumstances is just one way that we can help those who currently or will soon have limited or no access to care because of the pandemic.”

The expanded program will provide grants to eligible rare disease patients and caregivers up to $2,500 and to member foundations and support groups up to $20,000. The grants will provide funds to help address psychosocial, educational, and access to care challenges faced by members of the rare disease community. Grants will be awarded on a rolling basis with applicants receiving a decision as early as two weeks after submission.

The Continuity of Care RARE Patient Impact Grant program is made possible by initial funding from Horizon Therapeutics. “Horizon has been a longtime supporter of Global Genes, helping the rare disease community overcome challenges,” Haugstad stated. “We are honored that they are partnering with us again to ensure rare disease patients have the support they need in all areas of their lives for as long as the pandemic is a threat.”

For those who would like to help increase the impact of this program by making a contribution, please contact Global Genes at [email protected]. 

To learn more about the Continuity of Care RARE Patient Impact Grant, please visit www.globalgenes.org/raregrant. Applications are now being accepted for rare disease foundations and support groups. Applications for individual patients and caregivers not affiliated with a foundation will open in May.

About Global Genes®

Founded in 2008, Global Genes is a 501(c)(3) nonprofit organization that connects, empowers, and inspires the rare disease community, with the ultimate goal of eliminating the burdens of rare disease for patients and families everywhere. We provide hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government and other stakeholders, share data and experiences, and stand up, stand out, and become effective advocates on their own behalf. 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.