Interested in learning about the new HAE treatments and those on the horizon, how to overcome insurance reimbursement obstacles, advances in research for HAE with Normal C1-Inhibitor, HAE in women and children, and having your questions answered by HAE expert physicians?

If so, please go to the link provided below and register yourself and your family members for the 2021 US HAEA Virtual Summit Series. Sign up today to receive an exclusive 2021 Summit Series gift bag with distinctive items selected especially for you. You will also be eligible to win a $100 Amazon gift card!

About the Virtual Summit Series

In light of Covid-19 restrictions, the HAEA reimagined and designed an innovative alternative to the in-person Summits we have held every other year over the past two decades.

The Virtual Summit features four live events that will take place in May, June, July, and August, as well as pre-recorded videos of important HAE topics! All live events will be recorded and available for viewing along with the pre-recorded videos at your convenience.

The Virtual Summit Series features “must see” programming that includes:

• Information regarding new HAE therapies on the horizon,
• An expert panel of HAE Physician/Scientists who will answer HAE-related questions,
• Special segments covering
  • The latest information on HAE with Normal C1-Inhibitor
  • Women with HAE
  • Children with HAE
• An overview of the latest patient-driven research initiatives,
• Sessions featuring information for the youngest members of the HAE community,
• Fun games and opportunities to win prizes, and
• Interactive features allowing you to chat with other members, post to our community board, and upload selfies at our selfie station!

The exclusive live and pre-recorded programming will kick off on Sunday, May 16, 2021 to commemorate hae day :-).

Once again, we invite you to register yourself and all members of your household TODAY to receive your exclusive access link that allows you to participate in the 2021 US HAEA Virtual Summit Series!

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 - participate in the HAEA trivia game for a chance to win prizes

On-demand Programs

• Dr. Jennifer Hartstein presents coping mechanisms during a pandemic, stress, and HAE
• Grassroots Advocacy Efforts and Legislative Climate for Charitable Financial Assistance - a panel discussion with Dane Christiansen, Executive Vice President, at the Health and Medicine Counsel of Washington, Jim Romano, Executive Director for United for Charitable Assistance, and John Williamson, HAE Advocate at the US HAEA
• Youth Corner - Virtual ‘Capitol Hill’ Launch Party - exclusive reading of Nico’s Story, the third book in the HAEA Children’s Book Series. All participants will receive a FREE copy of the book mailed to them!

All times are listed in Eastern Time

Ten years ago, the United States Senate recognized the extraordinary resilience of the HAE community by proclaiming May 16th as hae day:-)! Since then, our community has made remarkable progress in raising HAE awareness, yet much more remains to be accomplished. That’s why, on May 16th, we will once again unite and Take Action for HAE to celebrate the 10th year anniversary of hae day :-).

We invite you to Take Action for HAE throughout the month of May, and raise awareness in your community:

• Share the recently published US HAEA Medical Advisory Board Treatment Guidelines for Managing Hereditary Angioedema with all of your healthcare providers. Download here
• Order and deliver free HAE ER Toolkits to urgent care centers, emergency rooms, school nurses, and first responders – to order an HAE ER Toolkit click here
• Request the HAEA Children's Books to be donated to a local school library, click here for more information
• Donate your HAE attack swelling pictures in support of the HAEA’s education programs by clicking here
• Create your own awareness event – click here to learn more

2021 marks the 10th Anniversary of hae day :-), and HAEi has developed a fun and creative campaign to celebrate this important milestone. Under the theme of ‘Let’s Take the Next Step,’ HAEi is asking its friends from all over the globe to take part in physical or well-being activities and regularly record the time you spend on each activity. Activities can be easily recorded on the campaign website at haeday.org. Any and all activity reported will be converted into steps. The goal is to generate enough steps for a virtual walk to travel across all the HAEi regions. Whether you walk, run, or cycle, or spend quality time reading, meditating, or gardening – you can enter the time for this activity to participate!

Registration for the 2021 HAE IN-MOTION® Virtual Challenge will be opening on May 16th! Join the HAEA along with your friends and family to raise awareness for HAE while participating in the HAE IN-MOTION® Virtual Challenge. This fun HAEA event will take place from June 14th through July 31st, and it’s FREE! Challenge yourself and help us reach our objective of spreading HAE Awareness by completing 50,000 miles by July 31st. Not a walker? No problem! You can also track your other activities and convert them into steps! Compete for awards by participating in our fun weekly challenges throughout the month!

If you have any questions, please contact Mike Mallory at mikemallory@haea.org.

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.

Access to reimbursement for the HAE treatment you’ve been prescribed is clearly the path to a better quality of life. The HAE Health Team is always available to navigate the complex and often confusing world of health insurance including dealing with denials and choosing a health insurance plan that best fits your needs. Click here to get in touch with one of our HAE Advocates.

Focus on your wellness

Taking care of ourselves is important for our overall well-being. Exercise can physically transform your body, and increase your overall sense of happiness and well-being. All the more reason to hit the gym or put on your walking shoes.

Support groups are another great way to take care of yourself. If you are interested in joining a monthly HAE support group, contact Troyce Venturella at troyce@haea.org.

Thanks to targeted advocacy efforts by the HAEA and the United for Charitable Assistance Coalition that we lead, Kentucky Governor Andy Beshear signed SB 44 (Charitable Assistance Bill) into law on March 25, 2021.

The bill, among other things, mandates that (1) insurance plans accept third party assistance from charitable organizations and places of worship, and (2) copayment assistance applies to “out of pocket” maximums.

Federal Update:

In Congress, the House introduced its bipartisan companion bill to the Senate Safe Step Act - H.R.2163.

The Department of Health & Human Services has extended the special Affordable Care Act (ACA) signup period through ACA exchanges until August 15, 2021 and outlined additional resources designed to help more Americans afford coverage.

To find out more, or to join the HAEA’s grassroots advocacy efforts, please contact John Williamson at john@haea.org.

The HAEA is honored to offer support to college students with HAE, like Molly, who are looking to improve their lives through academic achievement!

“I will always be grateful to the HAEA for supporting my academic endeavors throughout my college experience. I am thankful for the support of the HAEA in the past three years as I now enter my last semester as a college student. I look forward to continuing my education with the hope of giving back to the HAE community someday as a physician scientist.” -Molly

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 13: In the May episode of HAE Speaks, Lisa talks about how Team Jack started. Lisa also discusses all of the DIY HAE events Team Jack hosts and attends each year.

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

With many students planning to attend college next Fall, we thought it would be a great time to speak with Kelsie N., a current law student who has HAE. Kelsie provided us with a few tips that have helped her throughout her college life:

Kelsie’s college tips include:

1. Have a medical/emergency plan in place. Know where your local ER is, the nearest hospital, and have copies of all your documentation with you.
2. Go to your Disability Services contact on campus and attempt to get accommodations in place for when you need to miss class for an attack or other HAE-related reasons.
3. If you are living on campus, make sure you tell your roommates about HAE so they know what to do if there is an emergency.
4. Find time to enjoy yourself and make friends. HAE does not need to be the main focus of your time in college.
5. Anxiety can trigger attacks in some people and college can be stressful. Try to get ahead on your work when you can so that you reduce your chances of stress and anxiety down the line.

If you have any questions or concerns about attending college with HAE, please contact an HAE Advocate at (866) 798-5598 or contact us here. We are always here to help you!

Every month throughout 2021, we’re spotlighting healthcare workers in the HAE community. This month we are spotlighting Sonia.

“My name is Sonia Howell and I live in Alto, Texas. Living with HAE is sometimes a struggle. You never know when you might be sick or have an HAE attack. But, we have come so far in the last 10 years with the treatments available. I always loved taking care of people. When I was 15 my mom found out she had breast cancer and had to have a mastectomy. My dad fell and broke his hand in several places and had to have surgery the day before my mom did. They were on 2 separate floors so I stayed with my mom and took care of her. I gave her a bed bath and helped with her drains. I would run upstairs and make sure my dad was ok. This was when I knew I wanted to be a nurse. After graduation, I started nursing school and had to drop out due to my HAE. My mom wanted me to be a nurse so much that I applied again and was accepted. During my school year my mom died due to a laryngeal swell. I almost dropped out, but knew I needed to finish for her. I finished my degree and started working and have never looked back.

Having access to new medications has made such a huge impact. I’m able to work like a normal person. If I get sick, I can just do a treatment and go right back to work. For the most part, the treatments work immediately and you can start to feel better. Don’t let this disease define you. You can do anything you set your mind to, and enjoy life to the fullest!”

Thank you for sharing your incredible story with us, Sonia!

To share your story, please contact an HAE Advocate at (866) 798-5598, or email Jessica Myers at jessica@haea.org.

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, invites to special HAEA youth events, and quarterly activity books mailed out directly to them! Join TODAY!

Don’t miss our virtual launch party, featuring a special appearance by the book’s author, Caryn Seiler, an exciting virtual tour of Washington, D.C., and of course, a reading of the third book in the series: Nico’s Story.

Everyone who joins the launch party will receive a FREE copy of the book in the mail following the event!

“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, 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 26 is hosted by Carlie, who talks about her experience managing anxiety and 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.

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 May 31st are automatically entered in the May incentive to win one of three (3) Apple Air Pods with Wireless Charging Case, and will automatically qualify for a $25 Panera Bread Gift Card!

Attack Event Reports provide vital information!

All current Ruconest Safety Registry participants that submit an Attack Event Report between now and May 31st will receive a $20 Starbucks Gift Card!

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

“As of right now, there is no reason to think that the COVID-19 vaccines specifically cause any problems related to Hereditary Angioedema (HAE). These are RNA based vaccines, so there is nothing within the mechanisms or pathophysiology of HAE that suggests we need to be concerned about the risks or adverse side effects, specifically related to HAE. We all know that HAE is variable and that we have to be prepared. Therefore, stick with your management plan and know what you need to do if you experience any HAE related symptoms. But again, there is absolutely no evidence right now that we need to be concerned about the vaccines causing problems specifically for HAE.” - Marc Riedl, MD.

For more information on HAE and COVID-19, please watch the webinar here: “Dr. Marc Riedl shares his thoughts about COVID-19 vaccination for people with HAE.”

For more information, please visit www.angioedemacenter.com

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/91769567441

Phone Number: +1 646 558 8656 (Webinar ID: 917 6956 7441)

Sponsored by: CSL Behring

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?

“It's a great opportunity to learn more about the work that HAEA is doing, what advancements are being made, and ways to get involved and help out. Possibly most importantly, it's a way to meet some other patients and connect with them.” -- Jared W.

UPCOMING HAEA VIRTUAL MEET & GREET EVENTS

Tuesday, May 11th, 6:30 PM ET

• New Jersey & New York

Tuesday, June 8th, 6:30 PM CT

• Texas & Oklahoma

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.