Dear HAEA Friends,
We are happy to bring you the first 2021 edition of the HAEA in Action Newsletter. We are excited about our 2021 plans to better serve you by expanding our services, programs, activities, and events that are specifically designed to help you and your families have an improved quality of life.
We have good news to report as we start the new year. The FDA has approved BioCryst’s ORLADEYO™-- 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.
In the face of unprecedented challenges caused by the pandemic, our resilient community maintains a high level of enthusiasm for participating in HAEA activities, and in doing so, continues growing our national HAE advocacy movement. 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.
I wish you all a happy, healthy, and safe new year,
US HAEA President & CEO
Although the COVID-19 pandemic has affected donations to nonprofit organizations, your generous and sustained contributions enabled us to continue the programs and services that help so many in the HAEA community.
To honor your generosity and its impact, we have renamed January as “Thankuary”.
It means so much to us that you chose to support the HAEA either through participation in events and initiatives or donations to our fundraisers. Thank you for making a difference, your contributions to the HAEA have been more meaningful than ever.
We invite you to watch this special HAEA Webinar Brief featuring expert HAE Physician Dr. Riedl.
As we kick off 2021, we hope you all enjoy a happy and healthy beginning to the year, including taking the time to focus on your well-being! As the New Year begins, be sure to:
The HAEA Health Advocacy 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.
Wishing you all a safe and healthy New Year!
Connect! Learn! Create!
The HAEA is launching a new 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 to participate in!
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!
For more information or questions, contact Lisa Facciolla at email@example.com.
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 9: In this month's episode of the HAE Speaks podcast, Stephanie speaks with Missy about her HAE journey during her pregnancies.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to Mike Mallory at firstname.lastname@example.org.
Attending School with HAE during the COVID-19 Pandemic
Hereditary Angioedema (HAE) can present unique challenges for students attending school, especially during a global pandemic. Stress can amplify symptoms of HAE, so it is important for students to plan ahead and find ways to take care of themselves.
The HAEA spoke with HAE patient, Maddie, about the lessons learned while attending high school this past year:
“Right now, I am in a hybrid school model. It is a mix of virtual and in-person learning. We wear masks and social distance in the building, and only half of the students are in-person at a time. I attend school on Mondays and Tuesdays and am home for the rest of the week. With HAE, I find that it is important to keep a schedule, and stick to a routine as much as possible. I have classes at the same times every day, and then I go for a run in the evening. Adding things to an online calendar helps me to be organized and thoughtful about the time that I spend doing things. I also try to complete my work ahead of time as much as possible. Doing so, helps me avoid the unnecessary stress of leaving things for the last minute, especially with the classes that I'm taking.”
No matter what happens, you can count on us!
Reach out to the HAEA Health Advocacy Team at (866) 798-5598 for assistance or contact Jessica Dean at email@example.com, for more information.
Every month throughout 2021, we are spotlighting healthcare workers in the HAE community. This month we are spotlighting Shari. Thank you for sharing your incredible story with us, Shari!
“My name is Shari. I live in Chapel Hill North Carolina. I feel there should be a "part 1", and a "part 2" to my HAE story. Prior to the new therapies, life with HAE was very hard! It was full of pain and limitations. After the new therapies, my life changed dramatically. I no longer felt the limitations I once had and I was able to allow myself to dream big and pursue those dreams. Nursing was one of those dreams.
I always knew I was meant to care for people. As a child, I would put bandaids on leaking water balloons and try to mend broken butterfly wings. Around 11 years old, I had my first HAE swelling and it continued to increase in severity as I grew older. With worsening symptoms, my dreams were tucked away for a very long time. It was not until the recent therapies that my health improved to the point of being able to pursue my dreams of working in healthcare. After learning to advocate for my own health, I gained the confidence to pursue nursing and become an advocate for other people in pain.”
To share your story, please contact HAEA at (866) 798-5598, or through our website at HAEA.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:
The #BeyondHAE 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 have learned to navigate life with HAE or support a diagnosed family member.
Episode 24 is by Luke. Luke shares his HAE journey, from diagnosis, getting access to medication, to getting involved in the HAEA youth programs, and making lifelong friendships. Luke's story is about overcoming challenges to achieve his goal of living life #BeyondHAE.
The second book in the HAEA Children’s Book Series is now available!
If your family enjoyed reading Nico’s Lunchbox, you’ll LOVE Nico’s Surprise. 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 at firstname.lastname@example.org.
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 11 clinical trial sites actively enrolling with additional sites being activated soon.
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 email@example.com to see if there will be an active clinical trial site in your area.
As we say goodbye to 2020 and embrace the possibilities that 2021 has to offer, 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 anyone who has a blood relative with HAE, your participation enables 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 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!
Plan a fun night to meet other HAEA members from your community! The HAEA Virtual Meet & Greet Events are a perfect way to reach out and meet other people affected by HAE in your area. If you are interested in participating in an HAEA Virtual Meet & Greet please check out the HAEA Events Calendar , or reach out to Mike Mallory at firstname.lastname@example.org.
What would you tell someone who is considering attending a future HAEA Meet & Greet?
“I thought I had a pretty good idea about my HAE, and what the association offered... I was wrong. I learned so much. I would tell and encourage my family and others to do something like this, because you always learn something new.” - Sarah H.
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
Tuesday, January 26, 6:30 PM ET
Indiana, Kentucky, Michigan, Ohio
Tuesday, February 16, 6:30 PM PT
Pacific Time Zone along with Alaska and Hawaii
Register today to receive a FREE HAEA swag bag after the event!
For more information, please contact Mike Mallory at email@example.com or (513) 858-9370.