2019 Capitol Hill Day
More than 90 HAE patients, caregivers, and staff visited 87 congressional offices to deliver a vitally important message requesting that there is continuous support for the rare disease community. This annual event brings volunteer patient advocates to the Capitol to raise Hereditary Angioedema (HAE) awareness and advocate in favor of expanded research, access to charitable assistance programs, and increased research funding.
As part of their advocacy efforts, volunteers urged legislators to support the Affordable Care Act, a bill designed to protect individuals with pre-existing conditions; as well as the Safe Step Act (S. 2546/H.R. 2279), a bill to prevent arbitrary prior authorization and step practices. Additionally, volunteer advocates emphasized the importance of providing additional funding through the National Institute of Health (NIH) to ensure meaningful studies on rare diseases like HAE.
Grassroots advocates for the Hereditary Angioedema community are encouraged to continue to reach out to their members of Congress in their District Offices and to educate legislators and/or staff on HAE. A concerted message on how legislators can support the patient community through their sponsorship of the Safe Step Act S.B. 2546 and H.R.2279, and other legislative affairs will have great impact.
You do NOT need to be an expert in legislation to be effective; you just need to be willing to tell your HAE story. The HAEA will assist you with the rest. Taking action is easy!
We will continue to monitor these changes and advocating on behalf of HAE patients. To find out more, or to join the HAEA’s legislative advocacy efforts, please contact John Williamson at john@haea.org.
Congresswomen Eddie Bernice Johnson Receives the 2019 HAEA Distinguished Public Service Award
The HAEA hosted a Congressional Luncheon Briefing in which key House of Representative members and legislative staff heard testimonials on the importance of charitable assistance as an essential part of the healthcare safety net for patients with rare diseases like HAE. HAEA President & CEO Tony Castaldo then presented the 2019 HAEA Distinguished Public Service Award to Congresswomen Eddie Bernice Johnson from Texas. The Congresswomen spoke about the importance of patient advocacy and how much they appreciate hearing from their HAE patient constituents.
#Families4HAE Fundraising Campaign!
We're getting closer! Thanks to the generous donations from people like you, we have raised over $14,000 for the HAEA Youth Programs! But we're not done yet, and we need your donation to help exceed our goal.
We know that when young people affected by HAE learn to stand up for themselves and realize the power of their voice, they are more likely to realize that HAE doesn’t have to hold them back from their goals. This is why we are committed to helping young patients and caregivers every step of the way. The HAEA offers a diverse and challenging Youth Advocacy program to give kids and young adults the tools they need to turn their stories into action. By empowering our youth, we strengthen the HAEA family and launch a new generation of leaders to help spread HAEA awareness.
Make your donation go twice as far! Does your employer offer employee donation matching? Often people don't realize that their employer will match charitable donations made by employees. All you have to do is ask! Reach out to your HR department and ask, because they just might surprise you!
Your donation will inspire teens like Carlie and support young children in the Brady Club:
"Being part of the HAEA Youth Advocacy Program shows me that in a big world where HAE is a small thing, my voice is still loud enough to be heard and pursue a change within the HAE community." - Carlie
"My son loves getting his Brady Club Activity book, he even brought it to school to show his teacher. It helps him feel connected to the HAEA and helps having HAE less scary. He especially likes seeing other kids his age who have it too. When he saw a boy this month he said: "Wow, that boy is just like me, I'm not the only one." - Brady Club Parent
You can Inspire, Empower and Engage the next generation by joining the #Families4HAE Fundraising Campaign. To show our appreciation, for every donation of $20 or more, we will send you a #Families4HAE Pura Vida bracelet.
To donate to the #Families4HAE Campaign
Please send a check to:
Hereditary Angioedema Association
10560 Main Street Suite PS40
Fairfax City, VA 22030
*Be sure to write Families4HAE in the memo
or
#BeyondHAE Challenge for Youth Advocacy Month
HAE Youth Advocacy Month and the #BeyondHAE Challenge was a huge success! Young people from around the world participated in the #BeyondHAE Challenge, putting their passions on full display, showing who they are #BeyondHAE.
We SEE you! We VALUE you! We UNDERSTAND you!
Gift card winners will be announced on Friday, November 8th and will be notified via direct message!
We encourage you to keep posting and celebrating all the great things you do with the #BeyondHAE hashtag. You can also follow our youth community on Instagram by searching for @HAEAyouth. Our page is managed by a group of high school and college interns and is filled with HAE tips, educational information, youth stories, and so much more!
The #BeyondHAE Podcast is Coming!
Everyone has a story and this podcast highlights just that. The #BeyondHAE Podcast offers an opportunity for young people affected by Hereditary Angioedema to share their unique stories with you!
This youth-produced podcast series will touch on everything HAE related, plus offer stories of inspiration for listeners. Hear from a different host each week as they share their personal stories of perseverance, activism, and support. We hope that you find strength in listening to this podcast series from our HAEA community members.
The first episode will go live in just a couple days so be sure to search for us on all major podcast platforms including Spotify and iTunes!
November Health Team Focus
Don't wait - deadlines are just around the corner for insurance selection. Remember to be proactive, research and compare! And make sure to use resources like the Insurance Selection webinar to help make the best decision for your health.
The HAEA Health Advocates are here to answer your questions and provide direction as well. Make sure to keep an eye on the upcoming deadlines and let us know if we can help!
Deadlines
- Employer-based insurance: Check with your HR (Human Resources) Department
- ACA (Affordable Care Act / Obama Care): November 1 - December 15
- Medicare Open Enrollment: October 15 - December 7
- Medicare Advantage - Part D (prescription drug plan): January 1 - March 31
Schedule an appointment with the experts at the US HAEA Angioedema Center
Get a head start on your healthy New Year. Getting the correct diagnosis and treatment plan can be the start to a healthy life.
The experts and team at the US HAEA Angioedema Center at UCSD can be a great resource for you and your local healthcare team in getting the diagnosis and treatment plan that works best for you. Our goal is to make sure you are able to live your fullest life with your angioedema.
We offer travel grants based on financial need to assist with getting to the Center.
If you are interested, please contact an HAEA Health Advocate at 866-798-5598 and we would be happy to assist you.
Nico's Lunchbox is Now Available!
Patients and caregivers participate in a special book signing with the author of the first HAE kids book Nico’s Lunchbox, Caryn Sonberg Seiler. The US HAEA has teamed up with the children’s author to develop a three-book series to help kids learn about Hereditary Angioedema (HAE).
The book follows Nico, a young boy with HAE who, with the help of his mom learns to explain his condition to his friends at school.
This innovative book is a valuable resource for every family with small children. This is going to be a GREAT holiday gift, so plan ahead and get your copy fresh off the press!
For a suggested donation of $10 or more, we will send you your own copy of Nico's Lunchbox, shipping is free!
Have You Downloaded The Handy Advance HAE Mobile App?
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 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
The new APP 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.
HAEA Spotlight
Every month throughout 2019, we are spotlighting a different patient and their unique HAE story. This month we will be Spotlighting Kyle. We hope you enjoy following his story during the month of November.
"I'm Kyle from Austin, TX. HAE has been a part of my identity and a factor in my life since I was young. I am thankful to have medication and support that minimizes the negative impacts on my daily life.
HAE has its effects, but it doesn't have to limit what we do with our lives. Traveling as far as Africa can be a trigger for my HAE and there's always a concern of having a major attack while abroad, however, the therapies and support now available have given me the confidence to be bold and chase my dreams without HAE as a barrier." - Kyle
2019 HAE IN-MOTION® Fundraising / Awareness Events!
What a year! We wrapped up 2019 with 11 HAEA Meet & Greets, 7 HAE IN-MOTION® events, 7 patient-driven fundraising programs, and 2 unique awareness events.
On October 5th we ended this year’s HAE IN-MOTION® series with an exhilarating event in Providence, RI. We enjoyed a beautiful day along with HAE patients, friends, and industry partners who came out to Roger Williams Park to show their support. The day kicked off with a 5k walk/run followed by breakfast, pumpkin painting, delicious cupcakes, fun games, kids’ crafts, carousel rides, a bounce house, and more.
We also enjoyed a fun family event on October 13th, as Dr. Fatteh hosted a Top Golf fundraising event in Miami Florida in support of the HAEA.
We are grateful to all of the participants who made our 2019 events a total success! Stay tuned, as we are already making plans for the 2020 HAEA events, and we hope to see you there!
Do you have a great idea for an event? Want to host an event near you? Reach out to Mike Mallory at (513) 858-9370, mikemallory@haea.org!
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.
