Registration is now open for the three Virtual State-Specific Training and Networking Events, here. Register by Monday, May 3, 2021 at 5:00pm ET to be automatically entered into a drawing to receive a $50 Amazon gift card! One person from each state will be selected to win and will be notified during each live state event.
Due to the generous support of our sponsors, participants of each Virtual State-Specific Training and Networking Event will receive a RARE Care Package after the event, including a RARE on the Road t-shirt and other merchandise. Participation is required to receive a package.
*Please note, registration for each state-specific training and networking event requires residency within the state being spotlighted. Reference the FAQs, here.
Watch the recording of the March 23rd Rare Disease Leadership Interactive Webinar here and access the webinar slide deck here.
Haz clic aquí para obtener información en español y para registrarte.
Since 2017, Global Genes and the EveryLife Foundation have partnered to host RARE on the Road events around the country, developing the next generation of advocacy leaders.
With feedback from the community, RARE on the Road 2021 will consist of one interactive webinar, open to all who wish to attend, regardless of their geographic location, and three virtual, state-specific meetings focusing on issues and resources relevant to residents in Nevada, Florida, and Illinois.
2021 RARE On The Road Dates:*
March 23, 2021 (11:00am-1:30pm ET): A Rare Disease Leadership Interactive Webinar (Watch the recording here.)
May 4, 2021: Virtual State-Specific Training and Networking Event | Nevada
May 11, 2021: Virtual State-Specific Training and Networking Event | Florida
May 18, 2021: Virtual State-Specific Training and Networking Event | Illinois
Note: All virtual state-specific training and networking events will take place from 10:00am-12:15pm in the local time zone for each state. (Nevada – Pacific Daylight Time, Florida – Eastern Daylight Time, Illinois – Central Daylight Time)
*Out of an abundance of caution regarding COVID-19, The EveryLife Foundation for Rare Diseases and Global Genes have made the decision to transition our 2021 RARE on the Road State-Specific Training and Networking events from in-person to virtual. While we may not be able to convene in person, our commitment to facilitating interactive and meaningful experiences remains.
Thank you to our 2021 RARE on the Road sponsors.
Platinum Sponsors
Gold Sponsors
Silver Sponsors
Bronze Sponsors
Partners
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. We do not speak for patients. We provide the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and save lives.
About Global Genes
At Global Genes®, we believe that together we can do more to tackle the challenges of rare disease. We educate, equip, and empower the global community with tools and resources to influence change. We connect rare disease patients, advocates and rare disease experts to help eliminate the challenges of rare disease.