Welcome to MarylandRARE
Bringing advocacy into action to effect change & improve the quality of life for the Rare Disease Community in Maryland.
News Flash
On May 12, 2022, Gov. Larry Hogan signed the much-needed RUSP alignment bills, HB 109 (Shetty) and SB 242 (Hershey), for the state of Maryland.
Championed by EveryLife Foundation, Maryland is now the tenth state to pass such historic legislation. However, it would not have been possible without the support and dedication of our own rare advocates such as Jennifer Payne and Claudia Fennel and others, who provided riveting testimony during the hearings. Thank you everyone for your advocacy and support. To learn about this ground breaking moment, click the following link:
Rare Community - Grants & Scholarships
Scholarship for Survivors
PAF - program offering educational scholarships to students who have suffered (or are suffering) from cancer or a chronic illness. For students who have, despite their diagnosis, excelled academically, served the community, and desire to pursue a secondary education.
Academic Year 2023-2024 will open October 14, 2022.
RARE Belonging
Rare Belonging is a unifying marquee for a suite of funding priorities designed to benefit people affected by one of the over 7,000 rare diseases identified on the Genetic Alliance and Global Genes’ RARE list (Rare Disease), including patients, their families, and caregivers. Rare Belonging seeks to help the rare disease community cope with isolation, attain education and job skills support, and help alleviate economic burdens.
Ongoing
Upcoming - Rare Community - Events/ Webinars/Meetings
Nov 11 & 12 RARE Health Equity Summit - Global Genes
Presented in partnership with the Rare Disease Diversity Coalition (RDDC), the RARE Health Equity Summit connects stakeholders from the rare disease community, to find ways to collaborate on how to address inequities in the care of patients with rare diseases.
RDLA (Rare Disease Legislative Advocacy) - Monthly Meetings
- November 17th: Monthly Legislative Webinar
- December 15th: Monthly Legislative Webinar
