Global Genes Expands Grant Program to Provide COVID-19 Assistance

Rare Daily Staff

Global Genes, publisher of RARE Daily, has expanded its RARE Patient Impact Grant program to help members of the rare disease community affected by the 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 not affiliated with a foundation member, to connect to 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. 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.

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.”

If you would like to increase the impact of this program by contributing, please contact Global Genes at [email protected].

Photo: Kimberly Haugstad, CEO of Global Genes