NORD’s ‘Living Rare, Living Stronger’ Forum Celebrated Patients, Families

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by Patricia Inácio, PhD |

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Sessions advocating for increased access to treatment for rare diseases, and the need for greater equity, were some of the featured highlights of the NORD “Living Rare, Living Stronger Patient and Family Forum.”

Other key takeaways from the forum — hosted by the National Organization for Rare Disorders, known simply as NORD across the globe — were shared stories of medical breakthroughs, and the personal accounts of people with rare diseases, like Lambert-Eaton myasthenic syndrome (LEMS).

At the event, which gathered 300 in-person attendees and 110 others virtually, participants shared inspiring stories and boosted community connections through networking opportunities.

The participants also discussed ableism, or discrimination against people with disabilities, and the role of the caregiver. The annual forum took place recently in Cleveland.

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“I am thankful to NORD for allowing me to share my voice and I look forward to the next opportunity to participate in any way that would be helpful,” Jim Kuhn, patient advocate of the Foundation for Sarcoidosis Research and one of the speakers, said in a press release.

“Please pass on my kudos to NORD leadership for the terrific coordination of all of the forum activities, from beginning to end, by NORD team members,” Kuhn said, adding, “Over my 40+ years of business, ministry, and non-profit, this was one of the finest run conferences I have attended, and the absolute friendliest and most helpful staff. … I was blown away!”

The forum’s agenda included a keynote address by patients in which they discussed their journeys and presented motivational life lessons. This was followed by sessions that included strategies used by patients and caregivers to establish connections with an effective team of healthcare providers.

The event also included sessions directed to patients discussing how to cope with a rare disease and live a meaningful life. Other discussed topics included how to overcome ableism, which is often experienced by parents of a child with a rare disease, as well as how to cope with a rare disease diagnosis later in life.

“I have a rare disease, but I am not my rare disease,” said Kyle Underwood, program manager at the Cleveland Clinic, who also shared his experience at the forum. “My parents upon receiving my diagnosis could have been afraid and despaired, but instead they fought and advocated. Knowing I am able to make an impact on someone else’s life in the rare disease community, it keeps me moving forward.”

Patty Burks, a nurse and the director of clinical trial affairs at the Cystic Fibrosis Foundation, delivered the closing keynote presentation, titled “A Mother’s Story: How My Son’s Life Inspired Me to Make a Difference.” In it, she shared her family’s journey after a cystic fibrosis diagnosis.

“Every advancement in cystic fibrosis was done because cystic fibrosis patients participated in clinical trials. Every one of them,” Burks told conference attendees, advocating for greater involvement in such studies. “There is no one else that will move science forward for your disease. These drugs, these compounds, they have to be studied by people who suffer from the disease … . There is no limit to what you can do.”

In addition to patients and parents, speakers included medical doctors, registered nurses, and social workers.

The day closed with the Rare Impact Awards, a celebration of landmark achievements by individuals, organizations, and industry innovators working on behalf of U.S. residents with rare disorders. The ceremony was emceed by Art Alexakis, singer-songwriter and guitarist for the band Everclear.

Honorees included advocates, patients, caregivers, industry leaders, and more. The Sickle Cell Disease Association of America was given the Abbey S. Meyers Leadership award. Peter Hotez, MD, PhD, and Maria Elena Bottazzi, PhD, were given the Public Health Leadership Award.

Marshall Summar, MD, chief of the division of genetics and metabolism at Children’s National Hospital, was awarded the Lifetime Achievement Award. There also were several recipients of this year’s Industry Innovations Awards.

A special tribute was done to honor of NORD’s 2020 and 2021 Rare Impact Award honorees, who were only able to celebrate virtually.

“NORD began as a collective of patients and caregivers for the Orphan Drug Act back in the early 1980s, and we continue to advocate for the nearly 30 million Americans and 300 million people worldwide affected by rare disease,” said Pam Gavin, executive vice president of NORD, in remarks at the closing of the Rare Impact Awards. “Together, we will all contribute new chapters to this rich history with the hope that one day, we will eliminate the struggle of rare diseases once and for all.”

The broadcast of the Living Rare Forum is available, on-demand, until July 7. Registration is mandatory for full access.