ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading patient advocacy organization, and Youngtimers, the only US nonprofit organization dedicated to providing education, support, resources for the early onset familial Alzheimer’s disease (EOFAD) community today announced the inaugural Youngtimers Leadership Summit. The four-day event aims to gather key stakeholders to facilitate dialogue around the gaps in the field and how to prioritize the patient perspective, as well as the future of the organization. The in-person conference will be held from November 3-6 in La Jolla, CA.
Early onset familial Alzheimer’s disease (EOFAD) is a rare genetic form of Alzheimer’s disease affecting an estimated 45,000 people worldwide. Individuals with EOFAD can begin developing signs of dementia and other disease-related symptoms as early as their 30s and have a 50% chance of passing the mutation on to their children.
“Early onset familial Alzheimer’s disease can be a startling and isolating diagnosis to receive,” said Lindsay Hohsfield, Co-Founder and Executive Director of Youngtimers. “EOFAD families have come to rely on Youngtimers to help inform critical decisions about their disease journey. It’s crucial that we continue to build and provide for this community. This event will be critical in ensuring the sustainability and continued programming/support that Youngtimers provides to the community.”
The inaugural Youngtimers Leadership Summit is made possible through a grant from Global Genes, a leading rare-disease patient advocacy organization, as part of its RARE-Meet Ups program, which aims to fund critical education and much-needed in-person collaboration for rare disease patients, caregivers and advocates.
About Global Genes
Global Genes is a 501(c)(3) leading international non-profit organization that is establishing a globally connected community committed to overcoming the challenges of rare disease. Together with our partners, we help people find and build communities, gain access to information and resources, and provide hope and support for the more than 400 million people affected by rare disease around the globe. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.
About Youngtimers
Youngtimers is a 501(c)(3) non-profit organization created by a group of passionate and informed early onset familial Alzheimer’s disease (EOFAD) stakeholders who recognized a great need for a patient-led organization, leveraging the power of EOFAD to accelerate research and foster the community and infrastructure needed to improve patient lives and outcomes. We provide education, support, and resources and serve as a unique facilitator to elevate cross-disciplinary research collaborations and encourage innovate approaches to cure Alzheimer’s. For more information, please visit our website: www.youngtimers.org.
