From Ianice Viel, Patient Advocate and Social Media Manager
US HAEA Hosts Meet & Greet Events: The US HEAE kicked-off 2020 with an expanded focus on the Meet & Greet program. This outreach initiative offers patients and caregivers the opportunity to interact directly with each other and the HAEA staff. The events are designed so that attendees can meet other people affected by HAE in their local areas, share experiences, learn about HAEA programs and services, receive guidance based on individual needs, and develop a sense of community. The events are well attended and create a positive atmosphere for participants, particularly for newly diagnosed patients who are learning to navigate life with HAE. There are ten events scheduled this year in the following major US cities: Atlanta, Charlotte, Cincinnati, San Juan, Boston, Denver, Phoenix, Seattle, Minneapolis, and New Orleans.
US Clinical Trials Announced: Throughout the years, the US HAEA has actively supported the research and development of new therapies for the benefit of HAE patients.
Currently, the search for improved treatments and services continues with multiple ongoing recruitments for clinical trials taking place. The future is bright when we all support future research through clinical trial participation.
There are over 30 active trial sites across the U.S. enrolling patients in the APeX-S study, a worldwide clinical research study to investigate the long- term safety of an investigational oral medication to prevent HAE attacks. Furthermore, a new study has been announced to evaluate the safety and efficacy of repeated subcutaneous administration of Lanadelumab in preventing angioedema attacks in adolescents and adults with non-histaminergic angioedema with normal C1-INH, and in adults with acquired angioedema (AAE) due to C1-INH deficiency. Trial sites are beginning to open and are ready to enroll patients across the country. Additionally, there is an ongoing, small scale study to evaluate the safety, pharmacokinetics, and pharmacodynamics of Lanadelumab to prevent HAE attacks in pediatric subjects ages two to twelve years of age.
If you are a U.S. patient interested in participating in any of these trials, please contact John Williamson at gro.aeah@nhoj, to see if there is an active clinical trial site in your area.
#BeyondHAE Podcast: Each month, the US HAEA shares a story from a different youth host from the HAE community. Their stories are a true testament to the challenges and triumphs that we experience as a community.
Episode 6 is hosted by Ava, who is a caregiver to her little sister who has HAE. In this episode, Ava provides insight into how she has supported her sister during her HAE journey. While coping with a family member with a chronic health condition isn’t easy, oftentimes there are important lessons that are learned along the way. It’s important to remember that undiagnosed family members and caregivers often play a big role in supporting their diagnosed family member and that HAE truly affects the whole family. Listen to this and other HAEA Youth Podcasts at https://anchor.fm/haeayouth.
Serving HAE Patients with Kindness and Compassion: The US HAEA Health team is dedicated to working closely with everyone in our community by offering personalized support to anyone with a chronic, hereditary swelling symptom who needs help in getting a diagnosis and finding a treatment. While HAE is most commonly caused by a deficiency in the C1-Inhibitor protein, the HAEA Health team puts significant time, attention, and investment into helping people who suffer from chronic swelling but have normal levels of C1-Inhibitor. Every day, we aim to create long-lasting connections that unite us in the quest to help everyone with HAE attain wellness and happiness. Obtaining a correct diagnosis and having an optimal HAE treatment plan are the cornerstones of a better life. We have built a nationwide network of knowledgeable physicians who know how to diagnose and treat HAE. Our US HAEA Health team provides referrals to these physicians and can also arrange appointments with the highly skilled angioedema specialists at the US HAEA Angioedema Center at the University of California at San Diego.
Furthermore, many in our HAE family wish to connect with others to share life situations and challenges being faced when dealing with HAE. To meet this need, we also offer a virtual support group that provides a warm and caring environment conducive to supportive, compassionate discussions, and problem-solving.
We will not rest until all medical professionals have at least a basic understanding of HAE. We have therefore dedicated significant time and resources to our Physician Outreach program, which provides high- quality Continuing Medical Education courses to health care professionals through our special portal at www.haeedu.com:
• HAE Body Interact
• Consensus Guidelines on Improving the Management of HAE
• Angioedema in the Emergency Medicine Setting: Optimizing Management for Every Patient
