On June 7-8 in Los Angeles, California, the National Organization for Rare Disorders (NORD) brought our Living Rare, Living Stronger Patient and Family Forum and Rare Impact Awards to the West Coast for the very first time.
Hollywood, with its glitter and glamour, was the perfect location for NORD’s California community debut and to recognize this year’s stars of rare disease advocacy and innovation at the 2024 Rare Impact Awards.
In many ways, this was also a homecoming for our community, as it was a California Senator, Henry Waxman, who introduced the first law to incentivize research into rare diseases, the Orphan Drug Act of 1983.
Whether you attended in person, virtually, or couldn’t make it this year, check out our favorite moments from both events, below! You’ll also find links to watch videos of the Living Rare Forum sessions and the Rare Impact Awards ceremony.
Welcome to the Reception Party
Our Living Rare Forum featured a welcome reception for in-person attendees the evening of June 7th.We gathered for dinner, drinks, and sweet treats along with face painting, lawn games, and a special performance by three members of the iconic, all-women wheelchair dance troupe, the Rollettes!
Special thank you to the Rollettes for sharing their personal stories, including Kaylee Bays, a rare community member with Ehlers-Danlos Syndrome.
A Living Rare Forum attendee modeling our conference tote bag, featuring the winning design from our art contest by Jessica Barlow from Wilkesboro, NC!
A Day of Learning and Connecting with Others
On June 8, we kicked off the main day of the Living Rare Forum. It was a diverse audience of children and adults, patients and caregivers, nonprofit organizations and health companies, and more. Everyone came to meet one another and participate in workshops addressing some of the greatest challenges of life with a rare disease. Topics included:
- Health Equity for the Whole Rare Disease Community
- Overcoming Insurance Barriers with Rare Disease
- Newborn Screening in America
- Sexual and Reproductive Health Issues in Rare Disease
- The Benefits and Limitations of Genetic Testing
- Finding Purpose Despite the Pain
- Rare Breakthroughs in Research and Care
- And More!
Calling All Californians!
California Assemblymember Rick Chavez Zbur held a special town hall breakfast for California residents to discuss the bill to create a California Rare Disease Advisory Council (RDAC), which he proudly sponsored. Californians learned about the importance of having a Rare Disease Advisory Council and how to take action to move this legislation forward, including by taking part in NORD’s action alert here.
California aims to become one of 28 other states to establish an RDAC and give their rare disease community a strong voice in state government and healthcare policies.
Miles Levin, an award-winning writer, director and disability advocate sitting on the board of two epilepsy foundations, gave the Living Rare Forum opening Keynote speech! It included a screening of his must-watch short film, Under the Lights, which has become a full-length film and sparked a worldwide conversation about epilepsy portrayal on screen.
Miles shared this wisdom: “The meaning of life is: Does it matter if you get out of bed in the morning? That comes down to a sense of belonging, a sense of purpose, and understanding YOUR story and how it relates to where you’re going.”
The stellar team from KiDS NEED MoRE returned to provide disability-informed childcare for more than two dozen children on site. They didn’t just keep the kids entertained, they brought fun to the entire event.
The photo booth by Pix & Giggles, an LA-based business run by rare community member Griselda Macario and her partner, Jay, was a big hit! You definitely want to consider them for your own event or party!
Special thank you to our partners at Angel Flight West for providing free flights for attendees in need of assistance! It’s always our goal to go above and beyond to bring our community out to these events, and Angel Flight West helps make this a reality.
What Attendees Had to Say
“After struggling with an invisible disease no one has ever heard of for the last fourteen years, to be in company with others whose stories are similar to my own was surreal and amazing. Seeing the work NORD does to help others like me, families and caregivers was nothing short of inspiring.” – Laura R.
“I cannot say enough good things about the event, both the Living Rare Forum during the day and the Rare Impact Awards gala event as well. The keynote with Miles was so powerful and each panelist was well versed. I left each session more knowledgeable.” – Meaghan H.
If you want to watch this year’s Living Rare Forum discussions, including the screening of Miles Levin’s short film, recordings are available now on NORD’s YouTube channel! You can also watch our two-minute highlight reel here.
After the Living Rare Forum, we made our way to Universal Studios Sound Stage 15 for the 2024 Rare Impact Awards, where we walked and rolled across the NORD orange carpet in style and were greeted by Universal’s very own Minions!
Universal Studios has historical connections to the Orphan Drug Act. The popular ’80s TV show Quincy M.E. was filmed there. The show dedicated two episodes to the rare disease patient advocacy movement and its fight to ensure the ODA was signed into law by President Ronald Reagan. These two episodes and the actor, Jack Klugman, are considered pivotal roles that helped influence members of Congress and the President to sign the ODA into law on January 4, 1983. If you’ve never seen these powerful episodes, check them out here:
The Rare Impact Awards gala honored the individuals, organizations, and companies who made transformational strides in rare disease treatments, outreach, and care. This included nine Industry Innovation Award recipients for nine different first-in-class FDA-approved treatments, as well as our first ever Youth Champion Award, the Abbey S. Meyers Leadership Award, and more. Each has a unique story that you can read here.
We were privileged to have Peter Alexander, Chief White House Correspondent for NBC News and co-anchor of Saturday TODAY, as our host for the second year in a row. His perspective as a rare sibling and his professional storytelling skills helped bring to life the impacts of each of our honorees’ achievements. At one point, Peter Alexander even brought all of the children and teens on stage for a photo.
Referencing these children, NORD Vice President of Communications Cheryl Herbert informed the audience of the vital need for Congress to reauthorize the Pediatric Rare Disease Priority Review Voucher (PRV) Program, and directed everyone to take action on their phones. In that moment, 145 letters to Congress were sent.
Our youngest honoree was Abigail Villarreal, NORD’s first Youth Champion Award winner. Diagnosed with phenylketonuria (PKU), Abby was honored for raising awareness about the impact of rare diseases on children and young people in her community of San Antonio, TX. She accomplished this by creating “Be Rare Spirit Day,” an annual Rare Disease Day event at her high school that will continue even after her graduation.
The Awards came the day before Abby’s 18th birthday, so our audience of 200 people serenaded her with Happy Birthday in one of the night’s most moving moments!
Another of the night’s honorees was Yann Le Cam, founder and former CEO of EURORDIS – Rare Diseases Europe, who stepped down earlier this year after 25 years leading the organization. During that time, EURORDIS established and grew Rare Disease Day into an international day of awareness recognized officially by 106 countries as of this year.
Yann is a devoted father and true global advocate who has devoted more than 30 years of his life to advancing the fields of cancer, HIV/AIDS, and rare disease research. After decades of collaboration, we were particularly honored to host him and his EURORDIS colleagues in person at the Awards.
Last but not least, we surprised former NORD CEO Peter L. Saltonstall, who himself retired earlier this year, with a medal commemorating his 16 years of service to our community. Peter was NORD’s second CEO in our 41-year history, following NORD Founder, Abbey S. Meyers.
All of us at NORD thank Peter for his tireless commitment to our cause. And it’s not just us. Leaders from all across the rare disease community shared their own messages of gratitude to Peter, which you can watch here.
As we planned this surprise tribute, we remembered Dr. Anthony Fauci who, when facing the impossible during the COVID-19 pandemic, inspired all kinds of merchandise with his likeness across the nation. We felt the leader of the fight for access to quality care, treatments, and policies for rare diseases deserved the same honor, so we presented Peter with his very own Peter L. Saltonstall bobblehead, complete with a superhero cape, as a symbol of our appreciation!
You can watch the entire 2024 Rare Impact Awards ceremony (including all of the speeches, Abigail’s dance performance, and more), as well as the two-minute highlight reel, on NORD’s YouTube channel.
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