HAEA in Action September 2019 Newsletter

Health Team Fall 2019

Fall Health Team Focus

Fall brings the changing of the seasons, hayrides, campfires and, of course, changing the batteries in your smoke detectors. For a lot of us, it’s also the time of year to select or renew our insurance plans to ensure we have access to healthcare and our HAE medications for the next year. While this decision can often seem overwhelming, the HAEA Health Advocates Team is here to help you through each step of the process. As a starting point, we will be hosting a webinar on September 12th at 7:00 pm EDT, 4:00 pm PDT to discuss with patients on commercial insurance, as well as those that participate in the Health Care Market Place, the insurance options available in 2020.
Remember that the HAEA team is here to support you every step of the way. We offer a comprehensive list of services to help patients, including:
- Help with appeals when insurance denies or limits therapy access
- Virtual support group programs
- Assistance with travel expenses to see an HAE expert for diagnosis through the Chris Whalen HAEA Compassion Fund
- Help with physician referrals in your area
- Information to take to schools or to your primary health care provider
As fellow patients and caregivers, we understand that some days are easier than others but we are here to help you through the challenges.

 If you have any questions or need assistance, please contact the HAEA Health Team HERE!


Save the Date for the HAEi 2020 HAE Global Conference
The 5th HAE Global Conference sponsored by HAE International (the US HAEA is a member organization) will take place in Frankfurt, Germany from May 14 to 17, 2020.
Frankfurt is a vibrant city and its airport serves as a hub for many destinations worldwide. HAEi has chosen the Sheraton Frankfurt Airport Hotel as the venue since this hotel is located directly at Terminal 1 at Frankfurt International Airport.
As in previous years, HAEi will allow a certain number of spaces per country. Members of the US HAEA will be able to enter a lottery to attend the 2020 HAE Global Conference.

It’s free! Just go to your app store and search for "ADVANCE HAE”
The app:
- offers a personal attack diary
- provides an easy to read graph of your HAE attacks over time
- enters your data automatically into the HAEA Scientific Registry for members
We have also added some NEW FEATURES to let you set reminders directly on the Advance HAE app! These can include reminders to:
- take your medication
- reorder your prescription
- be notified when new app features are available
This new feature is available now on iPhone and is coming soon to Android!

Current Clinical Trial
Right now, patients are being enrolled in the APeX-S study, a worldwide clinical research study to investigate the long-term safety of an investigational oral medication to prevent Hereditary Angioedema (HAE) attacks.
If you have Type I or II HAE, and are interested in learning about an oral medication that could become an alternative to injections or infusions to prevent attacks, then please contact John Williamson at john@haea.org to see if you qualify.


Tell us what you think! Click on the link below and tell us about your experience at the 2019 HAEA National Patient Summit – Imagine the Possibilities!

Send your feedback HERE!


Nico's Lunchbox Pre-order!

The US HAEA has teamed up with children’s author Caryn Sonberg Seiler to develop a three-book series that will help kids learn about Hereditary Angioedema (HAE) in a relatable and interesting way. This first book is designed for kids with HAE and their siblings who are starting to learn about dealing with the condition. Parents will enjoy reading this first-of-its-kind storybook with their kids.
Eight-year-old Nico loves puzzles, sports, and video games. He also loves the rhyming blue notes his mom leaves in his lunchbox. Nico’s friends look forward to reading the notes, too. When Nico misses several days of school, his friends learn that Nico has a rare disease called Hereditary Angioedema. In "Nico's Lunchbox", Nico helps his friends learn about HAE and, in the process, he learns more about himself. The HAEA will ship your order as soon as the book is available.
The HAEA will ship your order as soon as the book is available.
Price: $5.99 each – with free shipping for all pre-orders



Calling ALL Youth! Get ready to celebrate HAE Youth Advocacy Month this October! We want to see all the amazing things you do #BeyondHAE. Like to cook? Enjoy taking long strolls by the beach? Watching TV or taking a hike through the woods? Show us what makes you unique with a picture featuring your #BeyondHAE sticker and enter for a chance to win a Visa gift card! Didn’t get your #BeyondHAE sticker or need an extra copy? Let us know by emailing lisa@haea.org.   


Spring 2020 Pam King HAEA Scholarship Program

Are you planning to attend a college or university for the Spring 2020 semester? The HAEA offers scholarships to diagnosed patients who are enrolled in higher education. Don't miss this opportunity to become a Pam King HAEA Scholarship Recipient!
The application period ends September 30 so get your application in today!

Click HERE to APPLY for the Pam King HAEA Scholarship!


Brady Club

The Fall 2019 Brady Club Activity books will be mailed out this month! If you have a child in your family, sign up for the Brady Club to receive a free activity book. Your kids will be overjoyed to receive an activity book in the mail addressed directly to them! Hop on the bus and join the Brady Club today! Don't take our word for it, hear what parents are saying about the Brady Club:
"My child gets so excited that his SPECIAL book comes. It makes my heart happy! Thank you!"
"Our daughter does not have HAE, but her older brother does and he does a lot of advocacy for HAE. It makes her feel like she is a part of that and teaches her."
"My son loves getting his Brady book, he even brought it to school to show his teacher. It helps him feel connected to the HAEA and helps to make having HAE less scary. He especially likes seeing other kids his age who have it too."

Join the Brady Club here!


HAEA Spotlight Camila

HAEA Spotlight

Every month in 2019 we are spotlighting a different patient and their unique HAE story. This month we will be Spotlighting Camila. We hope you enjoy following her story in September.
"I am Camila and I was born and raised in Puerto Rico. HAE can mean challenges and risks, but the most exciting part is not letting it hold me back from my goals, dreams, professional and social-emotional development.

During my first HAE throat swell, I tried my first medication. Afterward, I met with my specialist and we decided to take care of my HAE preventively. I have never let HAE hold me back, so my perspective is that I have lived a pretty much "normal" life, I do not feel different, weird or belittled. I think that being able to grow with a positive attitude and accomplish my dreams and goals are proof that challenges are part of daily life and you may overcome everything if you decide to.

2019 HAE IN-MOTION® Events!
September will be a great month as the HAE IN-MOTION® excitement continues! HAE IN-MOTION® events are an ideal opportunity for patients, caregivers, friends, family, and HAE community to come together, share stories, and support one another. Whether you are a runner, a walker or just want to support a loved one, we want to see you at your local HAE IN-MOTION® event!

Saturday, September 7, 2019 - Overton Park - Memphis, TN - (Awareness Walk)

September 7th will be our first HAE IN-MOTION® Awareness Walk at the beautiful Overton Park- Memphis, TN. The awareness walk through the park starts at 9:00 AM followed by FREE breakfast with your local HAE family and kids activities! Overton Park is a 342-acre public park in the heart of Memphis, Tennessee that includes a nine-hole golf course, Memphis Brooks Museum of Art, Memphis College of Art, Memphis Zoo, Levitt Shell, Rainbow Lake, Veterans Plaza, the Greensward, two playgrounds, and a 126-acre Old Forest State Natural Area. With so much to see and do, bring your whole family and enjoy the day!


Saturday, September 14, 2019 - Burke Lake Park - Fairfax Station, VA - (5K walk/run)
September 14th - Fairfax, VA will host an HAE IN-MOTION® 5K at Burke Lake Park, located just about 25 miles outside of the Nation’s Capital. Join your HAE family and show your support of the HAEA! The HAE IN-MOTION® crew will be at the park early preparing for a wonderful event. Check-in opens at 7:00 AM and the race will begin at 8:00 AM. If you are not a runner, no problem! Walkers and volunteers are always welcome. Bring your friends, family, neighbors, and co-workers and join us! Following the race breakfast sandwiches will be provided along with family activities. Make sure to stick around afterward and enjoy the park. Burke Lake Park is filled with activities tucked away in its 888 acres. Whether it’s riding on the miniature train or carousel, picnicking, testing your skills on the mini-golf or disc golf courses, indulging in a scoop of ice cream, taking in the sights from the tour boat, fishing, biking, or boating – Burke Lake Park has something for everyone!

Saturday, September 28, 2019 - Gabriel Park - Portland, OR - (Awareness Walk)
September 28th - HAE IN-MOTION® will be on the west coast for our second Awareness Walk in Portland, OR. Join us for a stroll through Gabriel Park and admire the magic of early fall season while showing your support for the HAEA. Check-in opens at 8:00 AM and the walk will begin at 9:00 AM. Breakfast sandwiches will be provided after the walk along with family activities. The path is great for families with an accessible play area, baseball field, basketball court, dog off-leash area, paths, skatepark, soccer field, softball field, tennis court, and volleyball court. Come alone to meet your local HAE family or bring your team!
Saturday, October 5, 2019 - Roger Williams Park/Carousel Village - Providence, RI - (5K walk/run)
October 5th - will mark the last of our 2019 HAE IN-MOTION® Events. Help us exceed last year’s record-breaking attendance at the Providence HAE IN-MOTION® 5K! Remember last year’s donut truck, carousel rides, lemonade cart, pumpkin painting, a marriage proposal and oh yeah, a 5k walk/run? What do we have in store this year? You will have to come out and see! After the event stick around to enjoy the amazing historic Roger Williams Park. The expansive property includes recreational ponds, public gardens, extensive walkways, tennis courts, ball fields, playgrounds, public art, and the Roger Williams Park Zoo. The Park also maintains several historic buildings used by the public, including the Bandstand, Museum of Natural History, Botanical Center, Temple to Music, and the Casino – just to name a few!

If you have questions or need help registering please reach out to Mike Mallory at (513) 858-9370, mikemallory@haea.org.
We will soon start panning for 2020 HAE IN-MOTION® events, Meet & Greets, fundraising events, and awareness events. Do you have a great idea for an event? Want to host an event near you? Reach out to Mike with your ideas!

Thank You to our 2019 Gold Level Sponsors (BioCryst, CSL Behring, Pharming and Takeda)!


Webinar Link: https://haea.zoom.us/j/968765676
Phone: +1 646 558 8656 (Webinar ID: 968 765 676)

Click here to say you're going!

Youth Webinar July 15th 2019

Webinar Link: https://haea.zoom.us/j/896434073
Phone: +1 646 558 8656 (Webinar ID: 896 434 073)

Click here to say you're going!


The HAEA is a patient advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote disease education and awareness. We provide personalized services to address the unique needs of HAE patients and their families, which include helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade the patient quality of life through improving diagnosis and knowledge of the disease, and encouraging a tailored, patient-focused use of available therapeutic options. The HAEA is product-neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies.

The US Hereditary Angioedema Association
10560 Main Street , Suite PS40
Fairfax City, VA 22030


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