Global Genes is pleased to announce the Foundation Alliance organizations who received the 2022 RARE Meet-Up Patient Impact Grants. These grants will allow rare disease member organizations to provide critical education and much-needed in-person collaboration for patients, caregivers, and advocates at the local level, and help equip participants to better serve their rare communities.
There was an overwhelming response to this call for grants, with more than 75 applications received across four topical categories
- Caregiver/Patient Support
- Scientific Updates and/or Clinical Research
- Capacity Building
- Ultra Rare Diseases
Congratulations to the five organizations who received the 2022 RARE Meet-up Patient Impact Grants, which include financial and additional planning and resource support to help make their in-person meetings a reality.
The Bleeding Disorders Alliance of Illinois will host a meet-up for people with rare bleeding disorders in Illinois, Indiana, Wisconsin, and Missouri to help build a community of support (no matter how small), teach empowerment strategies to overcome barriers in healthcare, and provide resources needed to live life with rare bleeding disorders today. The meet-up will also:
- Personally connect participants with others who have the same (or similar) rare bleeding disorders in the Midwest
- Allow participants to spend time with expert medical staff to answer questions during break-out sessions for each specific condition, including scientific pipeline information and how to become involved in research and clinical trials
- Identify future Rare Bleeding Disorder Ambassadors (with the National Hemophilia Foundation), who can support and share their stories so that others can learn where to go to find help
Congenital Hyperinsulinism International (CHI) will host its first ever regional meet-up in Southern California at the Cayton Children’s Museum in Los Angeles. In addition to having an opportunity to meet other families affected by Congenital Hyperinsulinism (HI), the meeting will focus on the HI Global Registry (the only patient-reported HI national history study) and the importance of patient reported studies in the development of new treatments. Children, accompanied by a caregiver, will also have a planned fun activity and party at the Museum while parents learn.
Helping Hands for GAND will hold their 3rd GAND Gathering & Scientific Conference in July at the Great Wolf Lodge in Mason, Ohio for individuals with GAND and their families to come together to support and learn from each other and professionals about development and medical issues associated with GAND and ongoing scientific research on GAND from GAND researchers, speech language pathologists, etc. An ultra rare diagnosis (200 diagnosed) that causes specific and profound challenges with development and speech, GAND needs an active and supportive community, and this conference is important and integral to building that community.
Phelan-McDermid Syndrome Foundation will host a Family Camp weekend retreat for families of children with Phelan-McDermid Syndrome at Morgan’s Wonderland in San Antonio, TX, an inclusive camp setting. The meet-up is focused on parent and sibling support and mitigating mental health challenges all in the relaxed setting of an adaptive camp that is designed for children with unique needs. New families will be matched with veteran families to help acclimate them to the community and find other families who share their experience.
The Youngtimers meet-up will focus on bringing together co-founders, patient advisory board members, and other stakeholders for a critical in-person capacity building weekend to strategize and plan for the future of their newly established foundation serving the early onset familial Alzheimer’s disease (EOFAD) community. Working together with a strategic planning and organizational development specialist, the Youngtimers organization will come away with a detailed and well-informed fundraising strategy to support a 3-year vision, plan to expand community outreach opportunities for EOFAD stakeholders, and develop a programming plan that addresses the changing landscape for caregivers, in-person interactions, and healthcare services.
More information, dates, and registration information will be shared as it becomes available. Thank you to all of the foundation members who applied for a RARE Meet-Up Impact Grant this year – your creativity and drive inspires us daily, and we hope to be able to fund more in-person meeting opportunities for Foundation Alliance members next year.
For more information about supporting the RARE Impact Grants Global Genes awards to its Foundation Alliance members, contact Kathy at [email protected] (Business Development) or Parvathy at [email protected] (Foundation Alliance).