NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

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by Mary Chapman |

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National Organization for Rare Disorders

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 NORD member organizations or students and $250 for advocates, physicians, or those in academia or government. In addition, tickets are $1,500 for NORD corporate council members, and $1,700 for industry representatives, including those in the pharmaceutical field.

There’s also a virtual option available for those who are unable to attend in person. Register for virtual access here.

In-person attendees must be fully vaccinated against COVID-19 before arriving in Cleveland or have received a negative PCR or antigen (rapid) test within 24 hours of retrieving their registration badge at the conference site. Proof of vaccination and a negative test may be submitted electronically. Go here for more protocol details.

The forum agenda, which includes lunch, opens with a keynote address wherein a patient will discuss their journey as well as present motivational life lessons. That will be followed by sessions that include:

  • Building and Quarterbacking Your Care Team. Patient and caregiver strategies for establishing and connecting an effective team of healthcare providers.
  • Beyond Coping: Resiliency While Rare. Rare disease patients and a social worker who supports patients with complex illnesses will share experiences and strategies for coping and living meaningful lives.
  • Transitioning from Childhood to Adulthood with Rare Disease. This session will explore how families can work with their care teams to successfully navigate the transition from childhood patient to adult.
  • Overcoming Ableism While Parenting with a Rare Disease. A discussion of “ableism” as experienced by parents who have a rare disease.
  • Rare Disease Onset and Diagnosis 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. This is about approaches to collaborative care that benefit patients and their families, available technologies and treatments, and possible future advancements.

The closing keynote address will be 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 medical doctors, registered nurses, social workers, and more.

Following the forum, there will be a shuttle service to the Rare Impact Awards, which celebrates extraordinary strides made by individuals and organizations on behalf of the millions of U.S. residents affected by rare disorders. The ceremony’s emcee will be Art Alexakis, singer-songwriter and guitarist for the band Everclear.

“For the first time since 2019, we look forward to an in-person celebration of the individuals and organizations making extraordinary strides on behalf of the millions of Americans impacted by rare disease,” NORD states on an announcement webpage. “The Rare Impact Awards is truly a celebration, and one for the entire rare community.”

Honorees will include advocates, patients, physicians, caregivers, lawmakers, industry leaders, and more. In addition, the Abbey S. Meyers Leadership Award will be presented 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 Industry Innovations Awards.

Last year’s virtual forum had more than 700 registrants from 47 states and 1o countries. Go here to watch 2021 sessions on demand. For more information about this year’s event, send an email to [email protected]

NORD is a patient advocacy organization that works to help rare disease patients and the organizations that support them.