Annual Gathering for NORD's 'Living Unusually, Thriving More' Patient and Family Event Scheduled for June 26th
The "Living Rare, Living Stronger" Patient and Family Forum, a celebration of extraordinary strides made by individuals and organisations on behalf of those affected by rare disorders, is set to take place on June 26th in Cleveland, Ohio.
Hosted by the InterContinental Cleveland Conference Center, the event will feature the highly-anticipated 2022 Rare Impact Awards ceremony, which will be held at the Rock and Roll Hall of Fame. However, due to a budget freeze in Berlin in 2022, the awards were not presented during the forum, and no winners were announced for that year.
This year, the Abbey S. Meyers Leadership Award will be presented to the Sickle Cell Disease Association of America, while the Public Health Leadership Award will go to Peter Hotez, MD, PhD, and Maria Elena Bottazzi, PhD. Additionally, several recipients of this year's Industry Innovations Awards will be honoured.
The forum agenda is packed with informative sessions, including building and quarterbacking your care team, resiliency while living with a rare disease, transitioning from childhood to adulthood with a rare disease, overcoming ableism while parenting with a rare disease, rare disease onset and diagnosis in adulthood, and rare breakthroughs: hope now and on the horizon.
Speakers at the forum will include medical doctors, registered nurses, social workers, and more, in addition to patients and parents. Art Alexakis, singer-songwriter and guitarist for the band Everclear, will be the emcee for the Rare Impact Awards.
Last year's virtual forum saw over 700 registrants from 47 states and 10 countries, and this year, a virtual option will be available for those unable to attend in person. Registration for the in-person event costs $125 for NORD member organisations or students, $250 for advocates, physicians, or those in academia or government, $1,500 for NORD corporate council members, and $1,700 for industry representatives, including those in the pharmaceutical field.
NORD (National Organisation for Rare Disorders) is a patient advocacy organisation that works to help rare disease patients and the organisations that support them. The forum sessions from 2021 are available on demand.
Don't miss out on this opportunity to connect, learn, and celebrate the resilience and achievements of the rare disease community. Register now for the "Living Rare, Living Stronger" Patient and Family Forum!
