The US HAEA, after months of planning, determined that it is not feasible to hold our usual in-person bi-annual Summit because of COVID-19. Our strong desire to never miss any opportunity to unite and inform the HAEA community, brought us back to the drawing board where we reimagined an innovative alternative to the in-person event. We are, therefore, very pleased to announce the 2021 US HAEA Virtual Summit Series, which will take place from May-August 2021.
The Virtual Summit Series will be presented in one-day events throughout the summer, beginning with the May 16th, 2021 celebration of hae day :-). Each of these one day events will present engaging and informative live and on-demand sessions through a visually appealing and easy to use virtual platform that the HAEA designed especially for our amazing community. Just like at a live Summit, the virtual platform offers exciting opportunities for you to engage and connect with your HAEA friends!
Sunday, May 16, 2021
7:00 PM – 9:00 PM ET hae day :-) Take Action for HAE
7:00 – 8:00 PM Virtual Conference Kickoff US HAEA President Tony Castaldo discusses the remarkable improvements in the HAEA community's quality of life and the importance of ongoing advocacy to protect access to HAE medicines
8:30 – 9:30 PM LIVE Breakout Session – Kahoot Virtual Game Night! Community Engagement and Fun
Wednesday, June 16, 2021
7:00 PM – 9:00 PM ET Ask the Experts - US HAEA Medical Advisory Board
7:00 PM – 8:30 PM Ask the Experts Panel Leading HAE Expert Dr. Bruce Zuraw moderates, as members of the US HAEA Medical Advisory Board respond to the most pressing questions from the HAEA Community
8:30 – 9:00 PM LIVE Breakout Session – Women in HAE An HAE expert physician panel discussion
Wednesday, July 14, 2021
7:00 PM – 9:00 PM ET Currently Available HAE Therapies and Those on the Horizon
7:00 PM – 8:30 PM Currently Available HAE Therapies and Those on the Horizon Leading HAE expert Dr. Marc Riedl explains the differences among modern HAE therapies and clinical trials underway, while by Dr. Raffi Tachdjian shares key advances in HAE pediatric care
8:30 PM – 9:00 PM LIVE Breakout Session Q&A with Dr. Riedl and Dr. Tachdjian
Wednesday, August 18, 2021
7:00 PM – 9:00 PM ET Navigating Insurance Coverage for HAE Medicines
7:00 PM – 8:30 PM Overcoming Insurance Plan Obstacles for Coverage of HAE Medicines A panel discussion
8:30 PM – 9:00 PM LIVE Breakout Session Q&A with panelists and industry payer
On Demand Programs:
All times are listed in Eastern Time
Login earlier at 5:30 PM ET to chat with members of the community and visit the exhibit booths.
Register TODAY to receive a FREE Summit gift bag!
We are working hard on many fronts to sponsor research to improve the quality of life of people with HAE. We are pleased to share with you an overview of current research initiatives:
HAEA / HAEi Health Economics Study Demonstrates the Value of New HAE Preventive Medicines
A study of HAE medicines published by a group of economists who receive funding from the insurance industry concluded that new preventive HAE medicines are not cost effective. The HAEA questioned the methods and conclusions of this study, and responded by initiating a comprehensive analysis to determine the financial and quality of life impact of the new preventive medicines. Almost 800 people with HAE participated in the study, and the results point to a drastically different reality from the economists’ study. The data reveals that the new preventive therapies yield (1) substantial economic value in light of remarkable decreases in attack frequency and (2) statistically significant improvements in patient quality of life. After an extensive peer review, the paper is now published, and available in print and free online at https://www.ingentaconnect.com/content/ocean/aap/pre-prints/content-200127
Hereditary Angioedema Primer
The HAEA joined forces with the prestigious medical journal Allergy and Asthma Proceedings and expert HAE physicians to develop a special supplemental edition on HAE diagnosis and management. The supplement was published in the journal’s November 1st edition. It contains 14 peer reviewed articles on vitally important HAE topics, and has been mailed to over 40,000 health care providers, including a targeted list of allergy-immunology fellows and specialists in training. As an HAEA member, you have free access to the supplement at https://www.ingentaconnect.com/content/ocean/aap/2020/00000041/a00106s1
US HAEA Medical Advisory Board 2020 Guidelines
The US HAEA Medical Advisory Board 2020 Guidelines for the Management of Hereditary Angioedema have been published and are downloadable from the Journal of Allergy and Clinical Immunology—In Practice, at https://www.jaci-inpractice.org/action/showPdf?pii=S2213-2198%2820%2930878-3. The guidelines provide the US medical community with a comprehensive scientific overview of HAE in all its forms (type 1, type 2, and HAE with Normal C1-Inhibitor) and offer best practices that emphasize the importance of the patient voice in determining an optimal treatment approach. The document embodies a consensus of prominent HAE physician scientists in the US, and will be used as an authoritative source for treatment related questions raised by health insurers.
US HAEA and Angioedema Center at UCSD Study of COVID-19
The US HAEA and the US HAEA Angioedema Center at the University of California at San Diego have conducted a survey with 1,400 respondents that include people with HAE and members of their household. The study is designed to 1) help determine if people with HAE are at greater risk of contracting COVID-19 or, if infected by the virus, manifest symptoms different from those seen in the general population, and 2) provide data regarding the impact, if any, of HAE medicines on the susceptibility to, or course of, a COVID-19 infection. The ultimate goal of the study is to safeguard our community’s well being by understanding the interaction between HAE and the virus. The results of this survey, which have been submitted to a peer reviewed medical journal, will help medical professionals develop the best treatment options and protocols for people with HAE who are afflicted with the virus.
HAEA Study of Insurance Reimbursement Challenges Faced by People with HAE
The HAEA has completed a major research initiative designed to help people with HAE and their prescribing physicians obtain insurance reimbursement for HAE medicines. To understand all aspects of the issue, we conducted detailed surveys of people with HAE and reimbursement specialists in the offices of prescribing physicians. We also conducted structured interviews with a representative sample of health insurance providers to gather their perspectives on HAE medicines. Based on this data, we have prepared guidebooks to help navigate the complex and often frustrating process for obtaining reimbursement for HAE medicines in the US. Separate guidebooks will soon be available for people with HAE and physicians who prescribe HAE medicines.
Continued HAEA Investment into Research for HAE with Normal C1-Inhibitor
The HAEA is dedicated to supporting the important members of our community who suffer from swelling that is not caused by a deficiency in C1-Inhibitor. We recognize that a sharpened scientific understanding of HAE biology and genetics is the first step in developing new and more effective treatments. That is why we support the search for genetic causes and biomarkers that define HAE with Normal C1-Inhibitor. Scientists at the US HAEA Angioedema Center at UCSD now have in-house genetic testing for several genes that are believed to be implicated. Physician scientists at the Center are committed to expanding the knowledge of this condition and working tirelessly to the development of suitable treatments.
Therapies in the Horizon
We have good news to report as we start the new year. The FDA has approved BioCryst’s ORLADEYO™ in the United States -- the first oral treatment for preventing HAE attacks that is not an anabolic steroid. In addition, the FDA approved HAEGARDA® (C1 Esterase Inhibitor Subcutaneous [Human]) in preventing HAE attacks in pediatric patients 6 years of age and older. Takeda is still recruiting for its clinical trial testing the effectiveness of TAKHZYRO® for HAE with normal C1-Inhibitor, and as many as three other companies will start clinical trials for new HAE therapies at some point during the year.
Despite being faced with a lifetime of daunting challenges, people with HAE have always found a way to overcome obstacles and achieve a positive outcome. This "can do" approach to life will undoubtedly be on display in our community throughout 2021.
The global HAE community continues to attract significant interest in developing new therapies. Interest in HAE clinical research continues to be strong.
Nine companies are in the process of developing new HAE treatments! These include:
You can learn more about these developing treatments by listening to Episode 3 of the HAE Speaks Podcast: Ongoing Research for New HAE Treatments, hosted by HAEA President and CEO, Tony Castaldo.
Listen to the HAE Speaks podcast on Spotify or Apple Podcasts or use the link here
Fall 2021 Scholarship Applications are now open!
Are you planning to attend a college or university in the fall of 2021? The HAEA helps students with a confirmed HAE diagnosis pursue their academic goals by reducing the financial burden associated with higher education. Applications for the Pam King HAEA Scholarship Program are open twice a year, so please take advantage of this opportunity, and complete your application before March 31.
Remember your rescue medications!
With Spring right around the corner, yard work and gardening may be in your future! Know your limits and don’t overexert yourself. Always keep rescue medications on hand in case extra activities bring on an attack.
Visit us at the HAEA Cafe!
Do you want to watch any of the HAEA archived webinars? The HAEA Cafe is an online community for people with Hereditary Angioedema (HAE) and their families. Access the Cafe to watch informational webinars on important HAE topics, check out the latest HAEA news, and participate in virtual support groups! Are you registered for the HAEA Cafe? Register HERE
Send us your updated membership information!
Attention all HAEA members! Is your membership information up to date? Be sure to regularly update your membership information and keep up with the latest HAEA news! Update your HAEA membership information HERE
Join us today! Become a member of the HAEA.
Do you have family members with HAE? Are they also members of the HAEA? The HAEA offers individualized support and assistance for people with HAE, their family members, and caregivers! Register as a member with the HAEA today. It is free and confidential! REGISTER HERE
The HAEA Health Team is here for you, please reach out to us at 866-798-5598 for assistance with: insurance issues, finding an HAE expert physician, updating your member information, if you want to join a virtual support group, or if you have an HAE related question.
HAE expert physician Dr. Marc Riedl shares his thoughts about the COVID-19 vaccination for people with Hereditary Angioedema (HAE).
We invite you to watch this special HAEA Webinar Brief featuring Dr. Riedl.
Applications are open during the month of March - APPLY TODAY!
The US HAEA is pleased to offer scholarships for children and young adults with a confirmed HAE diagnosis to participate in a virtual music therapy program hosted by the Children’s Music Fund of Los Angeles (CMF).
The program will offer 12 virtual sessions with a certified music therapist to explore music through the lens of a creator, producer, and a student.
The HAEA and CMF Music Therapy scholarship is available to US citizens with a confirmed HAE diagnosis who can commit to completing 12 one-hour long virtual sessions with a licenced music therapist. The scholarship is available to kids and young adults between the ages of 5 and 25.
Connect! Learn! Create!
The HAEA is hosting a series of virtual Meet & Greet events for HAEA youth and young adults that offer an opportunity to connect with peers while learning about what the HAEA has planned for them in 2021. We are also launching a fun social media project for all who participate!
Everyone who joins us for an event will receive an awesome #BeyondHAE swag bag with an exclusive #BeyondHAE t-shirt!
Connect with other youth with Hereditary Angioedema (HAE)!
Learn about the HAEA’s youth programs!
Create viral social media posts to raise HAE awareness!
Each event is age-specific. Register today to stay connected #TogetherApart!
March 4: Ages 20-22
March 11: Ages 23-25
For more information or questions, contact Lisa Facciolla at firstname.lastname@example.org.
We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAEA community. The podcast series tells the stories of individuals affected by HAE with the goal of connecting our community through shared experiences. Make HAE Speaks a regular addition to your podcast playlist and listen today on all major podcasting platforms!
Episode 11: In this episode, Missy, Marti and Marna talk about speaking with your children’s school and teachers of their HAE diagnosis. As mothers of children with HAE, they emphasize the importance of keeping the school up to date about HAE.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to email@example.com.
One of the most frustrating parts of living with HAE can be how unpredictably swelling attacks can appear in your everyday life. Many people with HAE struggle with the fear of attacks precluding them from engaging in everyday activities. However, our HAE friend, Isabel, has a different perspective.
“The unpredictability of HAE can be a superpower. For me, the unpredictability of it means that I’m grateful for every minute I’m well, every birthday party or class that I can attend. It helps me maximize the time that I’m well, re-center my priorities every time I’m sick, and ’seize the moment’.”
While it can be easy to feel discouraged by the uncertainty of HAE attacks, it is important to remember that we cannot let the fear of an attack prevent us from doing the things we love. By looking at her attacks as opportunities, Isabel has found a way to be thankful for the parts of her life that allow her to forget about HAE.
Every month throughout 2021, we’re spotlighting healthcare workers in the HAE community. This month we are spotlighting Courtney. Thank you for sharing your incredible story with us, Courtney!
“My name is Courtney and I am from Monument, Colorado. I am currently in my first year of medical school at the University of Colorado School of Medicine. I am 24 years old and was diagnosed with Hereditary Angioedema when I was 10. Living with HAE for me means continuously challenging myself to live limitlessly while always being mindful of my health. It reminds me to take time each day to maintain my physical and mental wellness, and appreciate those who have supported me through my HAE journey. My interest to pursue a career in healthcare was influenced by my experiences as an HAE patient. I can remember times I shared my diagnosis with physicians and felt like they were not listening to me and instead, focused on their own differential diagnosis. These encounters made me feel like my voice did not matter, and I did not have autonomy in my care. This all changed one ER visit when my caring physician took the time to learn about HAE, specifically my HAE, directly from me. She was compassionate, attentive, and insistent that we work together as a team to manage my symptoms. She is one of the reasons I decided to attend medical school. In the future, I want to offer patients the same respect and empathy she provided me. I want patients to feel their voice matters in their health management, and I want to work alongside them as they learn how to advocate for themselves. She inspired me by demonstrating the impact one genuine physician can have on individual patients and the healthcare system.”
To share your story, please contact an HAEA Patient Advocate at (866) 798-5598, or email firstname.lastname@example.org.
The Brady Club provides kids opportunities to learn about HAE and have fun at the same time! It’s FREE to join, and members get tons of perks to make them feel special!
Once registered, kids receive:
If you and your family haven’t read the HAEA Children’s Book Series, the first two books are now available to order.
The HAEA Children’s Book Series is a timeless resource for children learning to cope with their HAE. These popular books follow the adventures of Nico and his friends as they learn about HAE, build new relationships, and explore the world around them.
“As a four year old with HAE, my daughter doesn't know another child that is going through what she goes through. Nico felt relatable to her and gave her the feeling that she wasn't alone in her experiences!” - John
BONUS! With every order, we’ll include a FREE collectible sticker and an activity guide. Your kids will enjoy hours of fun as they complete puzzles, scavenger hunts, virtual trips, and more.
For more information or questions, please contact email@example.com.
The #BeyondHAE Youth Podcast series is a podcast produced BY young people with HAE FOR young people with HAE. Hear stories from young people affected by HAE, as they share the ways that they navigate life with HAE or support a diagnosed family member.
Episode 25 is hosted by Sophia, who lives in Connecticut. Beyond her HAE, Sophia runs track and is passionate about improving her times and advancing in her sport. She talks about how modern HAE therapies and the successful management of her disease have resulted in her having the best year yet. Sophia is an incredible example of a young woman who has not let her HAE hold her back from excelling in the sport she loves!
Make 2021 the year to join the US HAEA’s Advance HAE Scientific Registry and enable us to continue to provide researchers with the biosamples and information needed to continue critical HAE research!
Will you help pave the path for future generations?
If you are someone with HAE, or have a blood relative with HAE, your participation facilitates research for new and more effective medicines, better clinical care, and ultimately, enhanced quality of life for all affected by HAE. We have come a long way, but there is still more work to be done - join the Advance HAE Scientific Registry and support research into the next generation of HAE therapies!
If you are already a member of the registry, thank you for your participation! Please ensure you are sharing your information by submitting attack reports and quarterly reports through the portal, as this information is vital to researchers.
Download the FREE Advance HAE App today from the Apple App Store!
The Advance HAE mobile app makes it quick and easy to create your own personal record of life with HAE, storing all of the information on your HAE attacks and your HAE therapy/therapies. The app also allows you to create personalized, user-friendly graphs of the data you enter. You can also download a printer-friendly copy of your data to share with your physician, or use for an at-a-glance view of your medication administration and attack history.
Did you know? HAEA friends who are using the HAE medicine Ruconest can join the US HAEA Advance HAE Scientific Registry and Ruconest Safety Registry!
Are you currently: diagnosed with HAE, at least 13 years of age, prescribed Ruconest and not currently participating in a clinical trial for HAE? If so, you can provide vital information about how you live and manage your HAE while taking Ruconest by joining the Ruconest Safety Registry! The registry will close in June this year, and we need your help to ensure we have the safety data needed!
All new participants with paperwork completed by March 31st are automatically entered in the March incentive to win one of three (3) Bose Soundlink Wireless Speakers, and will automatically qualify for a $25 Amazon Gift Card!
Attack Event Reports provide vital information!
All current Ruconest Safety Registry participants that submit an Attack Event Report between now and March 31st will receive a $20 Starbucks Gift Card!
“There are two requirements for blood donation: first, it must be safe for the donor; and second, it does not pose a risk for the recipient. As long as the person with HAE is not having an attack at the time of the donation, being a blood donor should be safe. The second requirement is much harder to address. The rules are that people cannot donate blood within a year of receiving a blood transfusion. Cinryze and Berinert are much safer than blood transfusions, but the blood bank may still be wary.
In general, people with “immune” diseases are not supposed to donate blood. Whether this would include HAE, is again a matter of interpretation. In my experience, the blood bank will usually not accept a HAE patient as a blood donor. We know that the contact system (the kallikrein-kinin system that generates bradykinin) is unstable in patients with HAE. I would expect that the process of drawing blood and then re-infusing it would almost certainly activate the contact system and this could have some deleterious effects. So, I would also come down on the side of not donating.” - Bruce Zuraw, MD.
For more information, please visit www.angioedemacenter.com
Message from Takeda
Takeda is now recruiting HAE with Normal C1-Inhibitor patients for their clinical trial. Individual sites will comply with state and local guidelines and safety protocols for bringing patients into clinics.There are now 14 clinical trial sites actively enrolling, including new sites in Boston, MA, Rochester, MN, and Ann Arbor, MI.
If you have HAE with Normal C1-Inhibitor, and are interested in learning about new clinical studies to prevent attacks, please contact John Williamson at firstname.lastname@example.org to see if there will be an active clinical trial site in your area.
Webinar Link: https://haea.zoom.us/j/96552243371
Phone Number: +1 646 558 8656 (Webinar ID: 965 5224 3371)
Sponsored by: Fresenius Kabi
Webinar Link: https://haea.zoom.us/j/94253769752
Phone Number: +1 646 558 8656 (Webinar ID: 942 5376 9752)
Sponsored by: Pharming
Meet other HAEA members from your community! The HAEA Virtual Meet & Greet Events are a perfect way to reach out and get to know others affected by HAE in your area. If you are interested in participating in a HAEA Virtual Meet & Greet please check out the HAEA Events Calendar, or reach out to Mike Mallory at email@example.com.
What would you tell someone who is considering attending a future HAEA Meet & Greet?
“I always love the meet and greets. I get new information from them each time. Please go to gain knowledge, ask questions, meet others just like you!” Patient Aysha B.
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
Tuesday, March 16, 6:30 PM CT ND, SD, NE, KS
Tuesday April 20th, 6:30 PM MT MT, ID, WY, UT, CO, AZ, NM
Register today to receive a FREE HAEA swag bag after the event!
For more information, please contact HAEA Community Engagement Manager, Mike Mallory at firstname.lastname@example.org or (513) 858-9370.
On February 28th, the HAE and Rare Disease Communities joined together to celebrate Rare Disease Day. The HAEA encouraged our members to wear blue in support of those with HAE and all rare diseases. We had over 45 submissions of photos from our community members showing that rare is truly proud! Thank you to everyone who celebrated rare disease day with us!