The National Organization for Rare Disorders (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio.
The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference Center and will feature the 2022 Rare Impact Awards ceremony, which will be presented that evening at the Rock and Roll Hall of Fame. Go here to register.
The forum is free for patients and caregivers. Otherwise, tickets are $125 for member organizations or NORD students and $250 for lawyers, doctors, or those in academia or government. In addition, tickets are $1,500 for NORD Works Council members and $1,700 for industry representatives, including those from the pharmaceutical field.
A virtual option is also available for those unable to attend in person. Sign up for virtual access here.
In-person attendees must be fully immunized against COVID-19 before arriving in Cleveland or have received a negative PCR or antigen (rapid) test within 24 hours of picking up their registration badge at the conference site . Proof of vaccination and a negative test can be submitted electronically. Go here for more details on the protocol.
The forum agenda, which includes lunch, opens with a keynote speech in which a patient will discuss their journey and present motivational life lessons. It will be followed by sessions including:
- Build and support your care team. Patient and caregiver strategies for establishing and connecting an effective team of healthcare providers.
- Beyond adaptation: resilience, though rare. Patients with rare diseases and a social worker who supports patients with complex diseases will share their experiences and strategies for coping and living a meaningful life.
- Transition from childhood to adulthood with a rare disease. This session will explore how families can work with their care teams to successfully transition from child to adult patient.
- Overcoming ableism by being a parent with a rare disease. A discussion of “ableism” as experienced by parents with a rare disease.
- Onset and diagnosis of rare diseases in adulthood. A discussion of the unique challenges of living with a rare disease diagnosis after years of uncertainty or relatively good health.
- Rare breakthroughs: Hope now and on the horizon. These are collaborative care approaches that benefit patients and their families, available technologies and treatments, and possible future advancements.
The closing keynote will be delivered by a parent who will share experiences from their diagnostic odyssey and highlight the role of a caregiver. In addition to patients and parents, speakers will include physicians, registered nurses, social workers, and more.
Following the forum, there will be a shuttle service to the Rare Impact Awards, which celebrate the extraordinary progress made by individuals and organizations on behalf of the millions of American residents affected by rare diseases. The host of the ceremony will be Art Alexakis, singer-songwriter and guitarist of the band Everclear.
“For the first time since 2019, we look forward to an in-person celebration of the individuals and organizations who are making extraordinary progress on behalf of the millions of Americans affected by a rare disease,” NORD says on an announcement webpage. “The Rare Impact Awards are truly a celebration, and one for the entire rare community.”
Winners will include advocates, patients, doctors, caregivers, legislators, industry leaders, and more. Additionally, the Abbey S. Meyers Leadership Award will go to the Sickle Cell Disease Association of America, and the Public Health Leadership Award will go to Peter Hotez, MD PhD, and Maria Elena Bottazzi, PhD. There will also be several recipients of this year’s Industrial Innovation Awards.
Last year’s virtual forum had more than 700 registrants from 47 states and 10 countries. Head here to watch the 2021 sessions on demand. For more information on this year’s event, email [email protected]
NORD is a patient advocacy organization working to help rare disease patients and the organizations that support them.