Hello HAEA Family!

Thank you so much for being one of the more than 1,000 HAEA Friends who tuned into the first session of the 2021 HAEA Virtual Summit event that took place on May 16th, hae day :-).

By logging into our innovative virtual platform, you can view the May 16th session along with on-demand programs that include:

• a panel discussion on grassroots advocacy efforts;
• an informative conversation with nationally recognized family psychologist, Dr. Jennifer Hartstein, about coping with anxiety; and,
• an exclusive reading of the third book in the HAEA children’s book series, Nico’s Story!

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

But wait! There’s more! You can win great prizes like 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 June 16th.

We are so excited you were able to participate in our first virtual Summit event! See you on June 16th at 7:00 PM ET/ 4:00 PM PT when the HAEA’s Medical Advisory Board will be answering the most pressing questions from the HAEA Community live!

To receive your unique access link to the HAEA virtual platform click here!

2021 Virtual Summit Series Calendar of Events:

Wednesday, June 16, 2021 7:00 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 PM – 9:00 PM LIVE Breakout Session – Women in HAE

An HAE expert physician panel discussion with Doctors Aleena Banerji, Sandra Christiansen, and Tukisa Smith

On-demand Programs:

• Medical Advisory Board 2020 Guidelines for the Management of Hereditary Angioedema – an HAE expert physician panel discussion on the new MAB Guidelines and how viewers can share the information with their physicians
• Overview of COVID-19 and HAE survey with the physicians from the US HAEA Angioedema Center at UCSD
• HAE with Normal C1-INH – an HAE expert physician panel discussion

All times are listed in Eastern Time

Hundreds of HAEA friends and families will count their steps from June 14th - July 31st to raise awareness for HAE through the 2021 HAE IN-MOTION® Virtual Challenge!

Summer is the perfect time to get active. HAEA members are taking advantage of the warm weather to enjoy the fresh air while raising funds for three key US HAEA programs that directly impact community members:

• The Pam King HAEA Scholarship Program, which offers college tuition grants to HAE patients,
• The Chris Whalen HAEA Compassion Fund, which offers financial assistance for patients in need who must travel to see an HAE medical specialist, and
• The HAEA Research Fund, which supports a variety of research initiatives including the HAEA Scientific Registry.

The 2021 HAE IN-MOTION® Virtual Challenge takes place from June 14th through July 31st.

*The Virtual Challenge is an event for United States and Puerto Rico participants.

Register here!

Join our weekly photo-based challenges to compete for awards!

Each week, a photo challenge will be posted. The winner will be selected by our elite panel of judges based on photos shared in the Charity Footprints Scrapbook. Each weekly photo challenge winner and a grand prize winner will receive a fabulous prize! Remember to add these hashtags when posting so we can sort your photos:

Week one: Scenic 6/14-6/21 - #HAEINMOTIONscenic

Post a scenic photo for your chance to win HAEA Swag!
This can be a beautiful place you visited, your favorite trail, a lovely sunrise or any scenic photo you choose to share. *Photo must be posted by midnight 6/21 to be eligible!

Week two: Fun photo 6/21-6/28 - #HAEINMOTIONfun

Post a photo of you or your crew having fun for your chance to win HAEA Swag!
A family walk, playing in the backyard or at the park. *Photo must be posted by midnight, 6/28 to be eligible!

Week three: Swag 6/28-7/05 - #HAEINMOTIONswag

Post a photo of your HAE IN-MOTION® swag for your chance to win HAEA Swag!
Show off your race shirt and bag in a fun photo. *Photo must be posted by midnight 7/05 to be eligible!

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.

Summer travel is here! Whether it’s a weekend away or just a day off, it is important to plan ahead to keep your HAE under control.

• Always make sure you have your HAE medications with you.
• If you are going to be away from home, plan ahead for your medications shipments so you always have the treatments you need without interruptions.
• Inform your local health team of your travel plans and get an updated treatment plan letter to carry with you in case you need to seek treatment when you are away from home.
• Have fun and enjoy yourself!

Please share the CME with your physicians, nurses or pharmacists for an opportunity to earn free continuing medical education credits, provide an educational opportunity, and spread awareness on HAE and current treatment guidelines.

To access the CME program, please visit www.haea.org and go to Resources / For Professionals.

June is Healthcare Hero Recognition month! Healthcare professionals who go out of their way to provide us with an extraordinary level of kind and compassionate care are helping to improve the health and wellbeing of people with HAE. These healthcare heroes deserve recognition for their consistent and positive impact on improving our quality of life.

The HAEA is pleased to recognize dedicated HAEA Healthcare Hero, John Anderson, MD.

“My son was diagnosed with HAE at 8 years old. He is now 30 years old. In 2017 my son and I had the privilege of attending an HAEA meet and greet in our hometown, Dothan, Al, featuring Dr. Anderson. After his presentation, he took the time to speak with us one on one. The more we discussed HAE, I could see hope in my son’s eyes. His daughter, Letty, was diagnosed with HAE at 9 months old. She will turn 4 in July. My son knew right away that Dr. Anderson would be her HAE Specialist. His office is 3 1/2 hours away. They have worked with us when scheduling her appointments. Dr. Anderson and his staff are so caring and knowledgeable. He is so good with Letty. She talks about him when she plays with her Dr. kit. Through every swell, to ER visits he and Diane Paige have been there for us. They are always a phone call away. Dr. Anderson and his staff fought her insurance company and got her approved for preventative medication. We are so grateful for the HAEA and Amazing doctors like Dr. Anderson!” - Lisa

The HAEA is now accepting nominations for the HAEA Healthcare Hero Awards for an entire physician’s practice or for an individual doctor, nurse, physician’s assistant, or other healthcare professional that has provided you and/or your family with an exceptionally high level of care. Please consider submitting a nomination for a HAEA Healthcare Hero Award.

HAEA Healthcare Heroes will be recognized on our social media platforms and will receive an award for their office or desk as well as a certificate of appreciation.

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 the 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 14: This month’s HAE Speaks podcast, Chaeli discusses traveling with HAE. She talks about how she prepares to travel by car and plane.

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

Learning to cope with HAE can be particularly challenging for children, teens, and young adults. The HAEA Cares Program was designed to help young people with HAE overcome the hurdles of living with a chronic illness and offer support. We are now offering personalized kits addressed directly to your child, teen, or young adult.

Calling all Brady Club Kids and Parents! Log into the Brady Club and visit our new and improved “Submit Your Story” section. Your story will be shared in an upcoming edition of the Brady Club Activity Book! If you’re not already a member of the club, click below to register.

Brady Club members receive access to an exclusive online learning platform, invitations to special HAEA youth events, and quarterly activity books mailed out directly to them! Join TODAY!

In Nico’s Story, Nico cannot wait to get on the plane and head to Washington, D.C. He and his family will join other HAE advocates for Capitol Hill Day. Nico is excited to visit Congress and talk about what it’s like to have HAE. Best of all, he will get to see his good friends, Jay and Kai. He has not seen them since the surprise visit at the lake house last summer. Will Nico make new friends at Capitol Hill Day? What will he discover when he explores the nation’s capital?

BONUS! With every book ordered, we’ll include a FREE 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 Lisa Facciolla at lisa@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.

Episode 28 is hosted by Ava and her mom, Sherry, who talk about caring for, and supporting Ava's younger sister, Lillian, who has HAE. There have been some challenging times, but together they have been there to support Lillian through diagnosis, treatments, and management of her HAE.

Join the US HAEA’s Advance HAE Scientific Registry and 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 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 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. In addition, 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.

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 Christine Selva at cselva@haea.org.

If you would like more information on the US HAEA Advance HAE Scientific Registry, please email Sherry Swanson at sherryswanson@haea.org or click here.

Takeda is now 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 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 john@haea.org to see if there will be an active clinical trial site in your area.

Link Webinar: https://haea.zoom.us/j/93211019075

Phone Number: +1 646 558 8656 (Webinar ID: 932 1101 9075)

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 mikemallory@haea.org.

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

“You really feel a part of a community and as a team anything is possible” -- Ariella B.

UPCOMING HAEA VIRTUAL MEET & GREET EVENTS

Tuesday, June 8th, 6:30 PM CT

• TX, OK

Tuesday, July 20th, 6:30 PM ET

• ME, NH, VT, MA, RI, CT

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.