Our newly redesigned HAEA.org website is now live!

The HAEA community spoke and we listened! Your responses to recent surveys and focus groups helped us reimagine the haea.org website and transform it into an intuitive, dynamic, and mobile-friendly resource.

We hope you enjoy our new user-friendly format where you can find valuable resources such as:

• educational materials, including everything you need to know about successfully managing HAE,
• access to our kind and compassionate HAE Advocates,
• ways to connect to the broader HAEA community, and
• information about the HAEA’s programs, services, and activities.

The new website features enhanced sections tailored to particular groups within our HAE community, such as parents of children with HAE and newly diagnosed individuals. Other important upgrades include easier ways to search for and find information on:

• FDA-approved treatments,
• ongoing clinical trials,
• breaking HAE news,
• everything you need to know about hosting or participating in an HAEA event, and much more.

Visit the redesigned haea.org page and share your feedback and comments on our updated platform!

We want to provide you with the most convenient and responsive go-to-resource available on all HAEA topics.

You can’t afford to miss the final event of the 2021 US HAEA Virtual Summit Series covering this vitally important topic!

Thank you to the more than 1,200 members of our devoted HAEA community who have participated in our 2021 US HAEA Virtual Summit Series! Join us on Wednesday, August 18th, for our last exclusive event: Navigating Insurance Coverage for HAE Medicines!

This upcoming Summit Session will feature:

• Reimbursement specialists discussing insurance reimbursement obstacles being faced by people with HAE, and
• Representatives from major health insurers who will provide the payers’ perspective on how people with HAE and their doctors can successfully address delays and denials.

Program Agenda

Wednesday, August 18, 2021

7:00 PM ET- Navigating Insurance Coverage for HAE Medicines

7:00 - 8:30 PM LIVE Session

8:30 - 9:00 PM Q&A with panel of health insurance officials

On Demand Streaming Programs:

• HAEA Health Support - HAEA Health Advocates discuss the services and support provided by the HAEA, HAE health trends, and how to adapt to meet those needs
• HAEi - Global perspective on access to therapies
• Youth Corner - Catch up with the cast of Special Blood, the documentary film featuring children with HAE

Go to the US HAEA Virtual Summit Portal for an opportunity to win incredible prizes!

When you sign in to the Virtual Summit Portal, you are automatically eligible to win amazing prizes, including a Chromebook, Bose Speaker, or Kindle Fire, in addition to automatically being entered to win a $500 Amazon gift card when you attend our virtual events. Points will be earned every time you log onto the platform with the most being obtained by:

• visiting our sponsor exhibit booths,
• requesting a virtual meeting to ask a sponsor a question about their HAE medicines,
• watching the Sponsor Videos, and/or
• downloading the Sponsor PDF’s

Points are also earned by:

• posting your picture to the selfie wall,
• posting a message to the community board,
• chatting with members of the community, and/or
• watching the pre-recorded on-demand videos

Check how many points you have earned by viewing your profile. Winners will be notified via email on August 18th.

Access the Virtual Summit Series Portal, compete for prizes, and explore our on-demand programming that includes the highly relevant content from the three previous summit sessions.

Virtual Sessions will be available to all registrants for 30 days after the original event date.

The US HAEA continues to adapt to the COVID-19 pandemic without interrupting the important programs and services that we provide to the HAEA community. We are currently working on the 2022 programs that support your evolving needs and interests. As we monitor the pandemic, our priority is to make sure that you remain safe and feel comfortable when participating in any of our events.

We would like you to take a moment to answer a quick survey that will guide us in planning future programs. Your input is incredibly important to us and we appreciate your feedback.

Please stay healthy and safe.

Over 500 people joined in this fun event to raise HAE awareness.

With over 35,000 miles tracked -- the HAEA community once again came together to take action for HAE!

The event also raised funds to support key HAEA programs including the Pam King HAEA Scholarship Program, the Chris Whalen HAEA Compassion Fund, and the HAEA Research Fund.

Stay tuned to the HAEA social media channels for information on our future events.

Complete your Application for the Spring 2022 Scholarship before September 30th!

Are you planning to attend a college or university in the Spring of 2022? 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. We invite interested individuals to take advantage of this opportunity and complete your application before September 30, 2021.

“While many HAE attacks are unpredictable without a clear exacerbating event, physical trauma is a well-recognized trigger. Cutting, bruising, or impact injuries to soft tissue can sometimes result in subsequent development of localized angioedema that can be protracted and severe. This doesn’t happen in every person with every trauma, and we don’t understand why some people are more susceptible to certain triggers than others. However, it is common enough to be an important management tip: Be prepared with an effective acute medication for HAE if a physical injury or trauma occurs. It’s particularly important to remember this for planned traumas such as dental, surgical, or medical procedures that may be required for optimal health.

In some cases, patients have reported that local swelling at the injured site triggered other swelling in other body parts as well. This phenomenon is poorly studied, but suggests some systemic activation of the bradykinin system from even local tissue trauma.

The precise reasons for trauma causing angioedema remain a bit nebulous, but are almost certainly related to inflammatory proteins, cytokines, and tissue factors released from damaged cells activating the contact system and increasing bradykinin production. This is a normal process in humans since bradykinin is an inflammatory protein that has important roles in vasodilation and the sensation of pain as part of the body's usual response to injury. However, in HAE, the brakes for the bradykinin system are missing and this activation of bradykinin leads to excessive and uncontrolled tissue swelling.” - Marc Riedl, MD, MS.

For more information, please visit www.angioedemacenter.com

It is never too early to get ready for the new school year! As Summer days wind down, it is an opportune time to get your plan in order for the upcoming school year.

For young students:

1. Make an appointment with your child’s treating physician and get a copy of your most current treatment plan.

2. Set up an appointment with your child’s teachers, counselor, school nurse, athletic coach, and others.

3. Order your FREE ER toolkits: one for the school, and one for the local EMS that services the school here.

4. Visit our redesigned website to download and print useful information on putting together a school packet here.

Tips for college bound students!

1. Meet with your current treating physician and obtain a copy of your most recent treatment plan.
2. Locate a knowledgeable doctor near your college or university. Call the HAEA Health Team for help.
3. Order your ER toolkits to deliver to your school’s health clinic, local ER, and roommates.
4. Remember to set alarms for your treatment dates so you can stay on schedule.
5. Check out the College Resources here.

The HAEA Health Team is always 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) an HAE-related question.

The HAEA is pleased to recognize dedicated HAEA Healthcare Hero Troyce Venturella, RN, CCM, MPH.

“I am so grateful to have such a caring and committed nurse as Troyce on our HAEA health team. She goes above and beyond just being a nurse since she is also a person affected by Hereditary Angioedema (HAE). Troyce became a nurse to help others years ago, and she is so dedicated to helping all people affected by HAE now. Troyce recognizes our struggles and shares her vast knowledge to help people overcome any hurdles!” - Lois

Thank you Troyce for your dedicated service to the HAE community!

Recognize your HAEA Healthcare Hero! Those who are nominated will receive a personalized award to thank them for their dedicated service to the HAE community!

For more information, please contact HAE Advocate, John Williamson, at john@haea.org.

We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAEA community. The podcast series showcases unique stories of individuals affected by HAE with the goal of connecting our community through shared experiences. We invite you to add HAE Speaks to your podcast playlist and listen on all major podcasting platforms!

Episode 16: In this episode of the HAE Speaks podcast, Sonia discusses her journey with HAE and how much life has changed since her diagnosis.

Do you have a topic, question, or idea you would like us to cover? Send your suggestions to Mike Mallory at mikemallory@haea.org.

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.

We are excited to welcome members from the HAE International Youngsters community as the hosts for August’s episode of the #BeyondHAE Podcast! Nanna, Erini, Isabel, and Nevena provide a worldview of what it means to them to live #BeyondHAE in all corners of the world. As you listen to this episode, we ask that you reflect on your own story and what it means to you to live your life #BeyondHAE.

Has your child or teen struggled with their HAE diagnosis? As a caregiver, it may be hard to show your support in a tangible way that will comfort your child.

The HAEA has developed a series of age-appropriate “Cares Kits” that you can order for FREE to reassure your young child, teen, or young adult in their struggles with HAE. Each kit is filled with information to help educate young people on HAE, items to encourage advocating for themselves and others with HAE, and tools that will help them in their everyday lives with the diagnosis.

If you have any questions or would like more information, please contact Lisa Facciolla at lisa@haea.org.

The US HAEA is currently assisting CSL Behring in recruiting patients for the CSL 312 Garadacimab study, a worldwide clinical research study to investigate the safety and effectiveness of an investigational subcutaneous medication given once a month to prevent Hereditary Angioedema (HAE) attacks. There are currently 10 active sites in the US.

In this study, doctors will be evaluating Garadacimab, to assess its effectiveness at preventing HAE attacks by comparing it to placebo (inactive drug).

Patients (at least 12 years of age with Type I or Type II HAE) who participate in this study may receive either Garadacimab, or placebo, for six months. During that time, using on demand medication to help with acute attacks will be permitted.

The HAEA is also supporting Takeda’s efforts in recruiting people with HAE with Normal C1-Inhibitor for their clinical trial. Individual sites will comply with state and local guidelines and safety protocols for bringing individuals into clinics. There are now 14 clinical trial sites actively enrolling, including new sites in Tampa, FL and Chicago, IL.

If you have HAE Type I, Type II, or HAE with Normal C1-Inhibitor and are interested in learning about new clinical studies to prevent attacks, please contact John Williamson at john@haea.org to see if there will be an active clinical trial site in your area.

Link Webinar: https://haea.zoom.us/j/87852718497

Phone Number: +1 646 558 8656 (Webinar ID: 878 5271 8497)

Network with 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 mikemallory@haea.org.

What would you tell someone who is considering attending a future HAEA Meet & Greet?

“Do it! Learn about the HAEA and connect with others. Bobbi P.”

UPCOMING HAEA VIRTUAL MEET & GREET EVENTS

Tuesday, August 10th, 6:30 PM CT - MN, WI, IA, IL

Register here!

Tuesday, September 21st, 6:30 PM ET - WV, VA, NC, SC

Register here!

Register today to receive a FREE HAEA swag bag after the event!

For more information, please contact Mike Mallory at mikemallory@haea.org or (513) 858-9370.