From Managing Director Michelle Cuevas, US HAEA:
Multiple events: This year’s hae day :-) generated a lot of excitement in the United States with a large number of HAEA members participating in and/or hosting events, educating others, and raising HAE awareness in their communities! We are very excited that hundreds of the new HAE E.R. Tool Kits have already been ordered, and are being distributed to emergency facilities across the country. Efforts to share this Tool Kit not only help raise HAE awareness in countless local communities but also may help identify people who have swelling symptoms and have not yet received a proper diagnosis.
Meanwhile, HAE patients and family members registered 6,285,500 steps during the US HAEA’s first Virtual Walk/Run and as part of our hae day :-) celebration. Our energetic teams logged their steps from Rare Disease Day 28 February until hae day :-) 16 May 2019 and received a cool participant medal. Besides the Tool Kit distribution and the Virtual Walk/Run, many HAEA members hosted their own hae day :-) events to help educate their community. Through these unique events, important HAE information was presented to hundreds of people and awareness was broadly spread among the general public. Finally, over 3,000 USD was raised for the HAEA’s three key patient programs through the HAEA’s Facebook Campaign: 1) the Pam King HAEA Scholarship Program, 2) HAEA Compassion Fund, and 3) HAE Research. We are grateful to everyone who participated, supported, and continue to educate others on hae day :-) and beyond to benefit all HAE patients.
Exploring Global Research: US HAEA President and Chief Operating Officer Tony Castaldo, Director of Research Janet Long, and HAEi Executive Vice President and Chief Operating Officer Henrik Balle Boysen, participated in the 11th C1-Inhibitor Deficiency and Angioedema Workshop in Budapest, Hungary, along with the expert scientists from the US HAEA Angioedema Center at UCSD, Drs. Bruce Zuraw, Sandra Christiansen, and Marc Riedl. This series of conferences is organized every other year and is devoted to the presentation and discussion of the latest scientific findings related to bradykinin-mediated angioedemas.
Ready for the US HAEA National Patient Summit – Imagine the Possibilities: We are very excited about the upcoming US HAEA National Patient Summit taking place next month in Atlanta, Georgia. This event will host over 1,000 participants and will commemorate the US HAEA’s 20 years serving the HAE patient community in the United States. The Summit in Atlanta will bring together kids, teens, and young adults from around the world for a special three-day Global Youth Advocacy Program developed in collaboration between the US HAEA and HAE International. Participants will learn advocacy skills, participate in group project activities, develop awareness events, and more. Each participant will receive an Advocacy Certification upon the completion of the program. These attendees will also take part in the US HAEA’s Youth Leadership Council’s (YLC) Leadership Program, that includes Advocacy and Communication Training, and fun social events.
In addition, to the General and Youth Programs, the Summit will host a Professional-Scientific Track, that offers a comprehensive look at HAE research, and multiple topics of interest that will be presented by the US HAEA leadership, and the experts from the US HAEA Angioedema Center at University of California in San Diego.
Follow the HAE Youth on Instagram: The US HAEA has launched an Instagram account lead and managed by a group of six HAEA social media interns who highlight patient stories, upcoming events, interesting HAE facts, and more! Follow @HAEAyouth on Instagram to get updates and announcements about the HAEA youth programs. he interns will also document the 2019 US HAEA National Patient Summit events, including the Global Youth Advocacy Program that will take place in Atlanta, Georgia. The Summit event will include the participation of kids, teens, and young adults from the United States and around the globe. If you are between the ages of 12 and 25 and are a registered member of the HAEA YLC or HAE International Youngsters, you’ll want to follow us on Instagram to see what’s happening in Atlanta!
Symposium with Health Insurers: Marking a “first” for a patient organization, the HAEA organized and conducted a two-day educational symposium for major health insurers on 5-6 June in Chicago, llinois. The HAEA contingent – CEO Tony Castaldo, Managing Director Michelle Cuevas, Project Manager Christine Selva, and US HAEA Angioedema Center Clinical Director, Dr Marc Riedl – provided the insurance company attendees with a comprehensive overview of HAE while emphasizing the horrifying physical and psychological burden experienced when the condition is inadequately treated. The initial part of the meeting focused on educating the insurers about the indications and uses for each of the FDA approved modern HAE medicines. The sessions that followed centered around discussion of the value of HAE therapies in terms of dramatic improvements in the quality of life for all who are affected by HAE – patients, caregivers, and family members. The HAEA emphasized that modern HAE medicines yield a positive economic impact by (1) reducing the need for intensive medical treatment such as ER visits and hospitalizations, and (2) allowing patients to get off disability, pursue educational opportunities, maintain employment, and generally lead a fulfilling life. The symposium is part of the HAEA’s ongoing advocacy strategy, which aims at creating an environment where every patient gets access to and reimbursement for HAE medicines. The insurance company attendees affirmed that they now have a better understanding of HAE as well as the value and overall positive impact of modern therapies. The HAEA continues to apply learnings, like those gathered during the symposium to expand our insurance industry HAE education and awareness outreach activities.
