RARE Meet-Ups Impact Grant 2023 Recipients Announced

Global Genes is pleased to announce the Rare Disease Patient Advocacy Organizations receiving 2023 RARE Meet-Ups Impact Grants. Six recipients will receive financial support in addition to marketing, materials and resources for each Meet-Up. The Meet-Ups will be held between June and October 2023 to convene key stakeholders to foster collaboration, social support, education and awareness. As an exclusive funding opportunity for rare patient organizations that are a part of the Global Advocacy Alliance, this grant provides patient advocacy leaders with the opportunity to make a tangible difference in the lives of rare disease patients and caregivers across the globe. 

This year, more than 102 patient advocacy groups applied in three categories: Caregiver/Patient Support, Scientific Updates and/or Clinical Research, and Capacity Building. Congratulations to the organizations who received the 2023 RARE Meet-Ups Impact Grants! 

Charcot-Marie-Tooth Association will host 80 children aged 10 to 18 at Camp Footprint in Pennsylvania in August 2023. The free, six-day overnight camp will allow these children with CMT to enjoy traditional camp activities including swimming, arts and crafts, campfires, adaptive water-sports and music, while also socializing with other children with the similar physical limitations that they may share. Access to water sports through Healing Waters Wednesday will be an important aspect of Camp Footprint, as being in the water takes pressure off of weakened joints and limbs, and allows for more freedom than on land. Being around other children with CMT will allow campers to be their true selves and try new things.

Coffin-Siris Syndrome Foundation will host its 7th Annual Conference in Boston from July 14-16, 2023. The conference is an opportunity for patients and caregivers to connect with others in the CSS community, and alleviate the loneliness that often accompanies a rare disease diagnosis. While the virtual support network has been very helpful, in-person events like this annual conference gives participants the chance to enjoy inclusive, fun activities that will create lasting bonds within the community. The conference will include lectures and breakout sessions that will focus on medical, therapeutic and social challenges that patients, families, and caregivers face. The conference will also allow CSS researchers and the CSSF board to learn from attendees and prioritize research goals. 

The Support Group Leader Summit, hosted by the National Ataxia Foundation, will provide training for new and veteran volunteer support group leaders. These individuals play a vital role in advancing NAF’s mission by fostering networking spaces for those diagnosed with ataxia and their families, educating local communities about resources and opportunities, and engaging in fundraising efforts. Group leaders attending the summit will learn how to engage with their community using social media, maintain effective co-leadership, learn about programming and education available through NAF, and meeting organization. This Summit is a valuable resource for group leaders to provide outreach to their local communities and for NAF to spread the word about resources that they can provide.

The 2023 NEC Symposium, presented by the NEC Society in partnership with Cincinnati Children’s Hospital, will gather hundreds from around the world to advance innovative research and quality care practices for babies affected by necrotizing enterocolitis (NEC). Those participating in this symposium as moderators, speakers and guests will include patient advocacy groups and nonprofits, gastroenterologists, cardiologists, neonatologists, nephrologists, nurses, dietitians, patients and families. The 16 sessions during the symposium will address novel research, collaboration, and advocacy.

Portuguese Association for CDG & CDG Allies will provide both an in-person and virtual offering for those affected by Congenital Disorders of Glycosylation (CDG), which includes around 170 ultra-rare metabolic disorders. The in-person event will be split into two events in July 2023. “First World CDG Advocacy, Policy, and Leadership Academy” will focus on capacity building for PAG leaders, advocates and family members seeking to improve advocacy skills, and the “6th World Conference on CDG” will appeal to the CDG community at large, including drug development, therapeutic approaches, current research and care guidelines. The virtual option, “World Think Metabolic, Think GDG Academy,” will include expert-led pre-recorded video sessions through the WorldCDG website. These sessions will educate viewers on advances in CDG research and the drug development process, facilitate everyday CDG care and management, and encourage attendance at the 6th World Conference on CDG.

Yellow Brick Road Project will host its annual scientific and family conference July 31 – August 2, 2023. The 2023 HNRNPH2 Conference & Family Meeting will gather patients and families with scientists and clinicians who will discuss the latest research, conduct patient evaluations for the natural history study, and patients will be able to have evaluations on motor/PT assessments, neurological assessments, and EEGs. In addition, bloodwork and controls to create stem cells, and saliva swabs will be collected to investigate X-inactivation/skewing. Skin biopsies will be taken to cultivate patient-derived iPSCs. With less than 150 individuals diagnosed with HNRNPH2 related disorders, this in-person event will go a long way to gathering patient data and continuing the National History Study, as well as allow patients and families to connect to the scientific community and experience a sense of belonging.

Thank you to all of the Global Advocacy Alliance members who applied for a RARE Meet-Ups Impact grant this year. For more information about supporting the RARE Impact Grants, contact Kristin.Soto@globalgenes or [email protected] (Business Development) or Global Advocacy Alliance. A special thank you to the sponsors of the 2023 RARE Meet-Ups Impact Grant: Alexion, Biocryst, Genentech, and Travere