News
EveryLife Foundation and Global Genes Partner to Support Development of New and More Diverse Leaders in State-Based Rare Disease Patient Advocacy With RARE on the Road Leadership Tour
Global Genes and the EveryLife Foundation for Rare Diseases announced that the fifth annual RARE on the Road, a Rare Disease Leadership Tour, will kick off on March 23, 2021, with a live, interactive leadership webinar open to members of the rare disease community. The tour will continue throughout the month of May with three virtual events open to rare disease community members living in the states of Nevada, Florida, and Illinois.
Since 2017, RARE on the Road has united and activated the rare disease community on the local level. States are chosen each year with community feedback and with an aim to build a more inclusive and diverse rare disease community. The Rare Disease Leadership Interactive Webinar on March 23 is open to all who wish to attend, regardless of their geographic location. The three virtual meetings on May 4 (Nevada), May 11 (Florida), and May 18 (Illinois) will focus on state-specific issues and resources
relevant to patients, caregivers, and advocates with diverse backgrounds and needs impacted by a rare disease. Participants will take part in robust conversations with other locals about what it means to be an advocate, practice telling their own rare stories, and learn relevant updates regarding COVID-19 vaccine distribution in their state.
“Building a more inclusive rare disease community and ensuring that our black, brown, and LGBTQ rare patient voices are elevated continues to be a top priority for the Foundation. The RARE on the Road events were built to meet patients where they are and to welcome them to the rare disease community, allowing them to exchange ideas, share their rare stories, and learn how to make an impact,” said Julia Jenkins, executive director of the EveryLife Foundation for Rare Diseases. “The events are a unique opportunity for patients, caregivers, and anyone impacted by rare disease to connect and learn how to become a leader in the community. We’re excited to host the tour again this year in partnership with our friends at Global Genes.”
“This year’s virtual tour provides an important opportunity to help develop new leaders from diverse backgrounds in the rare community on a state-by-state basis,” said Craig Martin, CEO of Global Genes. “It’s an opportunity to bring people of diverse backgrounds together, bring us all closer to the unique experiences of advocates within and across rare diseases, and develop more effective community networks on a state basis to advocate on issues relevant to our community. We’re pleased to continue our partnership with the EveryLife Foundation on this initiative.”
RARE on the Road is made possible thanks to the support of our sponsors, including our Platinum Sponsor, Horizon Therapeutics, and Gold Sponsor, Biogen.
For more information, please visit raretour.org.
About Global Genes®
Global Genes is a 501(c)(3) nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf – helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. 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 the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.