Covid-19 will not prevent the HAEA community from coming together for our regular biannual meeting! A lot has happened since a thousand of us gathered two years ago. We do not want anyone to miss out on the latest HAE news and information that affects HAEA friends and their families.
Welcome to the US HAEA 2021 Virtual Summit Series!
We have reimagined and replicated the in-person conference experience so that you and your family feel like you are sitting in the meeting next to your peers.
Registration is now open for the 2021 US HAEA Virtual Summit!
When you sign up you will receive an exclusive 2021 Summit Series gift bag with distinctive items selected especially for you, and will be eligible to win a $100 Amazon gift card!
Just like at a live Summit, the virtual platform offers exciting opportunities for you to engage and connect with your HAEA friends!
Once registered, you will receive your personal and unique access code that allows you to participate in all Summit Series events designed exclusively for you.
2021 SUMMIT SERIES CALENDAR OF EVENTS
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
8:00 – 9:00 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 with Doctors Aleena Banerji, Paula Busse, and Sandra Christiansen
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 currently available 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
All times are listed in Eastern Time
Registration for these events is now open!
Always keep in mind that the HAEA Health Team is here for you, please reach out to us at 866-798-5598 for assistance with: 1) insurance issues, 2) finding an HAE expert physician, 3) updating your member information, 4) joining a virtual support group, or 5) if you have an HAE related question.
Happy April! Spring is right around the corner, and you may be spending more time outdoors enjoying the sunshine and/or traveling more. Please remember to follow COVID-19 Guidelines:
The Affordable Care Act insurance plans (ACA) are currently open for those who either do not have health insurance OR their current policy may not cover their HAE therapies. Now is the time to explore your available options to find the right fit for your future healthcare coverage!
The US HAEA Angioedema Center at UCSD has reopened and is now accepting appointments! If you would like to schedule an appointment with one of the Center’s expert physicians or would like more information on how you can travel to the Angioedema Center, please contact an HAE Health Advocate!
Have you downloaded the Advance HAE App? It is a great resource that allows you to have all of your HAE information available at your fingertips! Track your attacks, schedule reminder alerts to take your medicine, or set up reminders to reorder your medicine through your Specialty Pharmacies! Download it today from the Apple App Store.
We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAEA community. The podcast series showcases 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 12: Episode 12 is hosted by Jess, an HAE patient and HAEA team member. She talks about her journey through diagnosis, her experience traveling abroad, and what she would tell her younger self when she was first diagnosed with HAE.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to firstname.lastname@example.org.
We asked our HAEA resident RN, Troyce Venturella, for her advice for maintaining a positive mental well-being during the COVID-19 pandemic. Read her tips below:
It is important to keep a positive outlook despite the challenges we face dealing with HAE and the uncertainties brought by the pandemic. Successfully dealing with what confronts us, means taking time to cultivate your well-being. Taking care of yourself might mean taking a short walk around the block, reading a book, or talking with a friend. The most important thing is that you set aside time in your calendar on a daily basis, even if it is 30 minutes, just for ‘me time’. If you feel overwhelmed, reach out and talk with someone.
The HAEA is here to help you! We offer monthly virtual support groups for people with HAE and their caregivers. These support groups can be a beneficial and a safe place to talk about your feelings.
To join a support group, contact email@example.com.
Every month throughout 2021, we’re spotlighting healthcare workers in the HAE community. This month we are spotlighting Rhonda.
“My name is Rhonda and I live in Clovis, California. I am fortunate to be a mom to my daughter Raegan. She was diagnosed with HAE with Normal C1-INH in 2012. I have been given the challenge of fighting for, and supporting Raegan throughout her treatment. We do preventive care and therapeutic care during an attack. It's a good day when we don't have to talk about HAE because it means she has made it another day without pain, discomfort, or fear.
I wasn't able to attend college right after high school but I knew nursing was my career goal. When I was in my late 20s, married, and had Raegan, I started pursuing a career in nursing. It was challenging to say the least, but I persevered. I had no idea how important being a nurse would be in my family life. I knew I would have a career caring for people, but I didn't know that my nursing knowledge would be most useful in caring for my daughter.
I have always been driven by the adrenaline of emergency nursing, and my work in the emergency department is where I see patients and their families going through their most difficult times. Even though the people I encounter are anxious, scared, and at times, angry, I find they are more willing to trust me and recognize my compassion and empathy after I share my experience caring for Raegan.
The HAEA has given Raegan hope for a successful future. Before the HAEA, she was unsure about how she would live a "normal" life of schooling, career, and family. Now, with the help of the HAEA, she has the confidence to pursue all her hopes and dreams. She knows that her treatment will be guided by the HAEA and her opportunities are endless.”
Thank you for sharing your incredible story with us Rhonda!
To share your story, please contact an HAE Advocate at (866) 798-5598, or email firstname.lastname@example.org.
The Spring 2021 Brady Club Activity Books are here! Activity Books are mailed out directly to Brady Club members and provide kids with a fun and interactive resource to help them learn about HAE and connect with the HAEA community.
We would like to thank our sponsors, CSL Behring and Takeda.
If you and your family still haven’t read the HAEA Children’s Book Series, the first two books are 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 friendships, 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. Listen to 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 26 is hosted by Sophie and her mom, Melanie. Sophie and Melanie share the challenges and opportunities posed by changes in life while managing HAE. Life changes are inevitable and learning effective coping strategies is important to ensuring that you are able to navigate those changes while still effectively managing your HAE.
Make 2021 the year to join the US HAEA’s Advance HAE Scientific Registry and help us to provide researchers with the biosamples and information needed to continue critical HAE research!
If you are someone with HAE, or have a blood relative with HAE, your participation gives way to 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 and exceptional contribution to research!
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.
We are constantly striving to improve the Advance HAE mobile app. Do you have suggestions on how to improve the Advance HAE mobile app or additional features you’d like to see incorporated? Please let us know! Email your suggestions to firstname.lastname@example.org.
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! All new participants with paperwork completed by April 30th are automatically entered in the April incentive to win one of three (3) $100 Amazon Gift Cards, and will automatically qualify for a 20-ounce Yeti Rambler with Magslider Lid!
Attack Event Reports provide vital information!
All current Ruconest Safety Registry participants that submit an Attack Event Report between now and April 30th will receive a $20 Starbucks Gift Card!
“Like a lot of things with HAE, the approach is highly variable and dependent on the individual person. In some people, pressure or soft tissue impact will trigger swelling, so activities like contact sports (football, soccer) or those with repetitive impact or pressure (jogging, cycling) can be problematic. However, this isn’t true for everyone and I’ve seen some patients engage in these sports at a very high level with a good medical treatment plan. I encourage patients to cautiously try out various forms of exercise to find something they enjoy. Like most things, it’s important to ease into new activities and be prepared to treat an attack with medication. It may take some trial and error, but physical activity is an important part of a healthy lifestyle. My view is that the HAE management plan developed with your health care team should ideally allow the pursuit of most activities, including various forms of exercise.” - Marc Riedl, MD.
For more information, please visit www.angioedemacenter.com
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 email@example.com to see if there will be an active clinical trial site in your area.
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 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 learned about all the programs and support groups HAEA offers.” Patient Sheryl B
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
Tuesday, April 20th, 6:30 PM MT: MT, ID, WY, UT, CO, AZ, NM
Tuesday, May 11th, 6:30 PM ET: New Jersey & New York
Register today to receive a FREE HAEA swag bag after the event!
For more information, please contact HAEA Community Engagement Manager, Mike Mallory at email@example.com or (513) 858-9370.