Reflections from the 2023 US HAEA National Summit

December 1st 2023 | 5 minute read
We all know the insightful conversations, educational information, and unforgettable memories that occur when a large group of HAE community members come together and the US HAEA National Summit was no exception. The US HAEA was ecstatic to bring the HAEA community together for the first time in 4 years at the 2023 US HAEA National Summit in Orlando, Florida!
This event attracted over 1,200 HAE friends, along with caregivers, physicians, healthcare professionals, industry partners, and devoted volunteers, all congregating at the beautiful Rosen Shingle Creek Resort. Staying true to our steadfast mission of catering to the diverse and unique needs of our HAE community members, this summit featured several exciting tracks. Among them were main general sessions, a Professional-Scientific track, a Youth Health Management and Advocacy track, a Youth Leadership track, a Brady Cubs track (ages 5-7), and a Brady Bears track (ages 8-11).

The dynamic two-day general summit sessions proved to be an invaluable opportunity for members to not only connect after four long years, but also take advantage of the comprehensive offerings of educational presentations that were intricately woven around the summit's overarching and inspiring theme, Living Beyond Boundaries. The General Summit commenced with a heartfelt introduction and opening remarks by Tony Castaldo, HAEA’s President & CEO. He passionately urged the community to stand together with the HAEA in their ongoing efforts to champion and advocate for individuals affected by HAE.
“If we stick together and continue unleashing the magical superpowers that are sparked by an active and united HAEA community, it will be easy to continue protecting what we have already achieved while enabling future progress. So today, here in this room, let’s make a promise that we will continue to be part of the HAEA community and invoke our magical superpower to fight the good fight. Because, dear friends, we NEVER EVER want to hear anyone in the community ever say…why can’t someone help me.” - Tony Castaldo, Keynote Speech, 2023 US HAEA National Summit

The audience experienced a range of emotions as they witnessed a blend of heartfelt patient stories and informative industry and physician presentations, offering a sincere glimpse into the remarkable progress our HAE community has achieved together over multiple decades. The general sessions continued to explore highly informative topics like recent advancements in HAE research, treatment options, diagnosis, and discussions on grassroots advocacy.

Additionally, two highly-anticipated physician Q&A sessions effectively bridged the gap between medical expertise and questions from the community. Also, of particular importance was the exploration of the future of HAE, with a focus on the treatment prospects for pediatric patients, individuals with Normal C1-Inhibitor, and members of our community transitioning to Medicare, underscoring the HAEA's commitment in ensuring that no one is left behind.
The youth health management and advocacy track started on Thursday, July 20th, with informative sessions on how to care for your mental health and wellness while managing a chronic illness. On Friday, the young attendees participated in a workshop to better understand how they can participate in legislative advocacy to protect access to HAE medications. At the end of the advocacy workshop, youth leaders took the initiative to write over 60 letters to their legislators in Congress asking them to support the Safe Step Act, which would protect people with HAE from dangerous fail-first policies.
The youth leadership track provided ample opportunity for our youth participants to spread HAE awareness by drafting their own HAE awareness campaign and giving back by making gift boxes for Give the Kids the World Village. Attendees worked together in teams to create care packages for children living with chronic illnesses. Each care package included an RC Race Car, a felt tie blanket, and a superhero cape. It was amazing to see everyone work together as a team to create these projects. More importantly, with the care packages created, we brought smiles to 12 kids who received a reminder that they are not alone!

As we wrapped up our experience at the end of the day, we came together for an open mic session that provided everyone with an opportunity to listen to their peer’s stories and their experiences with HAE. Youth attendee, Jasmeen, said, “It felt wonderful to get up and share my thoughts and feelings. The activity helped me to experience a genuine and meaningful connection with my fellow youth community members.”
The Brady Cubs and Bears enjoyed several exciting and engaging activities throughout their program, including a visit from Brady Bear and Dr. Raffi Tachdjian to answer questions they may have about HAE. The Brady Cubs and Bears also learned about hosting a cookie pop-up event from a fellow kid cookie and fundraising expert, Dana, who founded Cookies4Cures in 2017. After collaborating with Dana and the pastry team from the Rosen Shingle Creek Resort, the kids held a Cookies4HAE fundraiser at the summit welcome dinner and raised funds for HAE research.

The Professional-Scientific Track drew an audience of nearly 200 healthcare professionals, physicians, researchers, and scientists. Led by the HAEA Medical Advisory Board, and enriched by insights from Copenhagen Economics researcher, Nikolaj Siersbæk, the sessions were thoughtfully curated to encompass a wide range of key topics. These topics included updates on diagnosing HAE and crucial diagnostic biomarkers, emerging treatments, and the development and validation of a new HAE Quality of Life (QoL) Instrument.

Interactive panel discussions within the track fostered dynamic idea exchanges, addressing significant considerations in treatment decisions, the care of women and pediatric patients, and the management of HAE with Normal C1-INH. Furthermore, the track featured an engaging poster-viewing session, showcasing a total of 28 posters that highlighted the latest advancements in HAE research.
Following two days of general sessions, the HAE IN-MOTION® event provided a chance for community members to come together, get active, and socialize following four years of separation. From leisurely walks along the hotel’s beautiful nature trail, to playful lawn games and an ice cream stand, attendees had a chance to unwind and enjoy the outdoors, all while celebrating their unique HAE journey!

Overall, this event was an opportunity for participants to reconnect and share experiences that bind the community together. Over 1,000 participants registered to participate in this event. It was an inspiring display of awareness as the HAE community filled the majestic nature trail wearing their HAE IN-MOTION® T-shirts. Following the walk, the resort's hallways were bustling with HAEA community members, their faces radiating not only from the Florida July sun but also with gratitude and a newfound sense of empowerment.
The 2023 US HAEA National Summit ended with an unforgettable evening dedicated to appreciating and recognizing caregivers for their commitment to the HAE community. Dr. Jennifer Hartstein, a nationally recognized child, adolescent, and family psychologist, presented tips on how caregivers can maintain a healthy and balanced perspective and lifestyle while supporting loved ones managing a chronic illness like HAE. The evening was undoubtedly filled with heartfelt appreciation and the sharing of experiences among caregivers, creating a sense of empathy and understanding. Dr. Hartstein's expertise added a professional dimension to this dinner, offering caregivers guidance on how to navigate the unique challenges they face while caring for individuals with HAE.

Following the presentation, attendees celebrated the event's conclusion with karaoke and live music. Meanwhile, the youngest members of the HAE community enjoyed a Disney-themed dinner and movie night, with special guests, Mickey and Minnie. This memorable evening served as a perfect ending to another successful HAEA National Summit!
Are you interested in sharing your story? The HAEA Community Blog wants to hear from you! Get started here.