NORD’s Living Rare Forum and Rare Impact Awards Highlight Powerful Patient Stories and Community Rock Stars

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NORD’s patient centric conference showcased inspiring individuals, expert resources and presentations, and a festive celebration at the Rock and Roll Hall of Fame

Cleveland, OH, June 29, 2022 – This week, the National Organization for Rare Disorders (NORD®) hosted the Living Rare, Living Stronger NORD Patient and Family Forum, NORD’s annual family focused conference. 300 enthusiastic attendees from across the globe (and 110 more virtually) convened to share inspiring stories and to forge community connections through networking opportunities.

Featuring content on the most critical rare issues, including access to treatment, ableism and equity, the role of a caregiver, and medical breakthroughs, the 2022 Living Rare, Living Stronger Patient and Family Forum was a strong, safe, and successful return to live gatherings for the rare disease community.

“I have a rare disease, but I am not my rare disease. 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.” – 2022 Living Rare Forum speaker Kyle Underwood, MHA, Program Manager at the Cleveland Clinic

“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. 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. 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. As a presenter and attendee, I was blown away!” – 2022 Living Rare Forum speaker Jim Kuhn, Patient Advocate, Foundation for Sarcoidosis Research

The closing keynote address, “A Mother’s Story: How My Son’s Life Inspired Me to Make a Difference” was presented by Patty Burks, MA, RN, CCRC, Director of Clinical Trial Affairs at the Cystic Fibrosis Foundation. Burks’ powerful words told her family’s emotional story facing a rare diagnosis and perfectly encapsulated the inspiring series of plenaries and panels that attendees experienced both in-person and online.

“Every advancement in cystic fibrosis was done because cystic fibrosis patients participated in clinical trials. Every one of them. 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.”

The Living Rare Forum continued into the evening with the Rare Impact Awards, a celebration of the outstanding individuals, organizations, and industry innovators and their exceptional work benefiting the rare disease community. Presented live at the incredible Rock and Roll Hall of Fame in the heart of Cleveland, the event was emceed by Art Alexakis, Grammy nominated singer-songwriter and guitarist of the rock band Everclear. During the ceremony, caregivers, advocates, patients, and leaders were honored with Rare Impact Awards, and companies received 2022 Industry Innovation Awards for the latest lifesaving breakthrough therapies and treatments.

The Abbey S. Meyers Leadership Award was presented to The Sickle Cell Disease Association of America, the Public Health Leadership Award was given to Dr. Peter Hotez, MD, PhD and Dr. Maria Elena Bottazzi, PhD, and the Lifetime Achievement Award was awarded to Dr. Marshall Summar, Chief of the Division of Genetics and Metabolism at Children’s National Hospital. There was also a special tribute to NORD’s 2020 and 2021 Rare Impact Award honorees, who had been previously celebrated 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 the closing remarks at 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.”

All content from the Living Rare Forum is available on-demand until Thursday, July 7. Access is free for members of the media. Register now for full access, to revisit lessons learned, and hear from all key experts and speakers.

Sponsors for the weekend included gold sponsor, Horizon, as well as silver sponsors Apellis, Biogen, Bristol Myers Squibb, Genentech, Incyte, Insmed, PharmaEssentia, Takeda, and Travere Therapeutics.


About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit