The HAE Association and the US HAEA Angioedema Center at UCSD invite people with HAE and their families to participate in an important anonymous study that seeks to understand how COVID-19 affects the HAE community.

The information gathered through the survey will help us (1) determine whether people with HAE are more susceptible to the virus, and (2) does HAE or taking HAE medicines affect the duration and/or severity of an infection. The data gathered for the study will provide valuable insights that could guide treatment decisions for anyone with HAE who may contract Covid-19.

We will share the findings once the study is concluded. Completing the survey will take approximately 10 minutes per person. You can take this survey on a computer, tablet, or smartphone.

COVID-19 may be disrupting our daily lives, but it will not derail our mission to raise HAE awareness. Taking into consideration social distancing guidelines and the health and safety of our community, this year we have opted to move forward with the HAE IN-MOTION® events virtually, using the same platform for our hae day :-) event held in May. We are hopeful that next year, we will be able to retake our in-person HAE IN-MOTION® events, but for now, we invite you to join us in keeping healthy and active while raising HAE awareness and funds through our Virtual Challenge.

On August 24th, we will roll out four simultaneous events across the country that will run through September 30, 2020. These four events will not only reach the individual cities of the original events, but encompass the entire United States. The events will be divided into four regions: Western, Central, Midwest & Puerto Rico, and Northeast. To keep things exciting, the regions will go head to head with weekly challenges!

The online platform for these events will enable participants to register, set up teams, invite friends and family, and also provides a chat feature (shared only with other registrants) and a scrapbook feature (allowing photos to be uploaded showing participants engaging in activities for the event). We will even set up some friendly competitions between the regions as we go, and offer the opportunity to win weekly prizes!

Save the Date and stay tuned for our announcement on August 24th with the registration link and more event details, and get ready to participate and support your region!

If you have any questions on the 2020 Virtual HAE IN-MOTION® Events, please contact Mike Mallory at mikemallory@haea.org.

We look forward to your participation!

There are a lot of things to consider when sending your child back to school. New teachers, new schools, and new routines require parents to develop new relationships, and a solid plan to ensure that you and your child’s school are prepared to address HAE related situations as they arise. Below you will find a few key tips to support you in this process.

Kids (Pre-K - Middle School)

Ensuring that your child has an effective treatment plan and an emergency plan in place is vital to fostering a productive environment for your child.

• We encourage all parents to meet with your child’s physician each year to develop an updated treatment and emergency plan to ensure that your child has rescue medication available in the event of an attack. If you don’t already have it, request a copy of the emergency plan in writing and obtain a diagnosis confirmation letter at this meeting.
• Connect with your child’s teacher, school nurse, and administrative staff to discuss your child’s HAE, and your goal of partnering with the school to make sure that a plan is in place and everyone is on the same page in the event your child experiences an attack that interferes with school. Click here to access the HAEA’s guide to developing a comprehensive HAE educational teacher packet.
• Research the benefits of a 504 plan to determine if it would be an asset to your child’s educational plan. For more information about what a 504 plan is, and how to obtain one, visit here. Ensure that your child stays on schedule with their HAE treatments to help keep their HAE managed.
• Talk with your child to encourage them to pay attention to their body and swell triggers. Promote wellness by ensuring they get plenty of sleep, stay physically active, and eat nutritious meals.

High School & College Students

High school and college years can present unique challenges for young people with HAE as they become increasingly independent and gain new responsibilities. Remember that it’s just as important to take care of your emotional health as it is to take care of your physical health, whether you are attending school virtually or in person. Below are a few suggestions to help you focus more on your education, and less on your HAE.

• Develop consistent daily routines, even if you are learning virtually.
• Work with your HAE treating physician to develop a comprehensive treatment and emergency plan that you can have in writing.
• Be your own advocate. Learning to talk openly about your HAE can be challenging but is an important part of growing up.
• Maintain open communication with your family/support network to notify them when challenges arise.
• Continue to update your teachers/professors about your HAE and what they can do to help you succeed.
• Make sure that classmates and friends are aware of your condition and what they can do to help you if needed.
• Take time for yourself. School can become overwhelming and it’s ok to take a break and reserve some ‘me’ time.
• If attending college, visit the Student Accommodations office to document your HAE, and secure an agreement so you aren’t penalized for unexpected absences.
• For college students, whether new or returning, read through our resource, Preparing for College to learn helpful tips and suggestions to aid in a smooth transition here.

If 2020 has taught us anything, it is to expect the unexpected. At the HAEA, you can always count on us for support and resources, especially during difficult times. We are proud of our strong community, and value the opportunity to offer key services and the resources you need.

In a few weeks, you will be receiving a letter in the mail from us highlighting all the ways we’re adapting to serve our community during these uncertain times.

The unpredictable environment on Capitol Hill continues to create uncertainty for patients with rare, chronic, and life-threatening conditions who rely on charitable assistance programs for access to life-sustaining therapies. The ongoing Fiscal Year 2021 appropriations process, congressional efforts to address the COVID-19 pandemic, and administrative initiatives focused on steering patients to the least expensive forms of healthcare have all disrupted health policy.

Against this backdrop, the HAEA continues to work with community partners through the United for Charitable Assistance (UCA) to prevent discrimination against patients with complex and costly medical conditions. On July 10th, UCA once again co-hosted and participated in Chronic Disease Day. This year, the virtual format of the event produced a robust participation with over 1,000 grassroots advocates joining the educational briefing with the Director of the National Institute of Minority Health and Health Disparities, Dr. Eliseo J. Pérez-Stable, and patient advocates. Over 600 grassroots advocates also participated in the advocacy training that followed. The training encouraged patients to reach out to Members of Congress in support of; 1) funding for the Chronic Disease Education and Awareness Program at CDC, and 2) legislation to facilitate access to charitable assistance programs.

In this regard, Senator Kevin Cramer (R-ND) is preparing to introduce a bipartisan provision for the ongoing COVID-19 response effort that would remove barriers that patients experience while seeking to utilize charitable assistance programs. This relief would apply to the emergency period corresponding with the COVID-19 pandemic. While the path forward is unclear, there is an emerging understanding on Capitol Hill that charitable assistance programs will play a central role in the health safety net as the country experiences serious economic challenges.

After members of Congress return from the August recess, UCA will be hosting a virtual Coverage and Access Forum. This event will feature timely updates from community leaders on key health policy issues, including step therapy, co-pay accumulators, and access to charitable assistance. Additional information will be provided closer to the event.

Action Alert— Senator Kevin Cramer’s Provision on Charitable Assistance

Charitable non-profit patient assistance organizations serve as a vital safety net that helps thousands of Americans afford their health care every year. With millions unemployed due to the coronavirus pandemic, the need for charitable assistance is greater than ever. Unfortunately, a growing number cannot receive assistance without fear of being denied health coverage.

Lawmakers are considering adding legislative language introduced by Senator Kevin Cramer of North Dakota to the next COVID-19 relief package that would allow non-profit groups like patient assistance organizations to provide third-party premium assistance. We need your help to get approval! Please contact your Senators and urge them to stand with patients and defend patient access to non-profit charitable assistance.

If you are interested in participating in this Action Alert or the HAEA’s grassroots advocacy efforts, please contact John Williamson at john@haea.org.

We are pleased to announce that Ianice Viel is part of the HAEA Health Team, and she speaks fluent Spanish. Ianice will support our HAE Spanish speaking community by providing assistance that includes physician referrals, peer-to-peer support, guidance on access, and reimbursement for your HAE medicines, while also sharing the latest news and HAE materials in Spanish, and more.

For assistance with your HAE questions or needs in Spanish, you can contact Ianice Viel at ianiceviel@haea.org or (866) 798-5598.

Para asistencia con sus preguntas o necesidades, puede comunicarse con Ianice Viel at ianiceviel@haea.org o a través del número de teléfono libre costo (866) 798-5598. También, puede acceder a nuestra página de internet www.haea.org y oprimir el icono de español para aprender más sobre nuestros distintos servicios.

We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAE community. Our podcast episodes offer valuable information from patients, caregivers, and medical professionals on how to manage HAE and your diagnosis. Listen today on your favorite platform!

Episode 5: Caregiver Mandy, shares the story of her son's journey to an HAE diagnosis.

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

Every month throughout 2020, we will spotlight a different patient and their unique HAE story. This month we are spotlighting Mary. We hope you enjoy the following story during the month of August.

“My name is Mary, and I’m from Oregon. In the past, living with Hereditary Angioedema (HAE) meant uncertainty. It meant living in fear, no matter how optimistic I am by nature. Living with HAE now means two injections a week and going to bed each night not worried about what body part I’ll be unable to use the next day.

Access to HAE therapies saved my life. I have not had an attack in FIVE YEARS since taking the medication I use twice a week. Also, I now have the freedom to be able to run - I run often. I am free to play guitar without my hands swelling up. I will never, in all of my life, be able to wrap my mind around this enormous blessing that is a treatment for HAE.”

A picture of HAE swelling could help medical professionals identify the signs of HAE, and test possible patients for it quickly, avoiding misdiagnosis. The pictures can prove particularly useful, in the case of emergency treatment in an ER. The HAE maintains a library of images that illustrate swelling attacks. The photos are part of the educational materials we provide to physicians and other medical professionals. If you have photos of yourself during an HAE attack, we kindly invite you to share them.

Please send your high-resolution photos to ianiceviel@haea.org. Then, click on the link below to complete the consent form, allowing us to use your photos for HAE education.

The Summer 2020 Brady Club Activity Book is here!

Sign up today to get your activity book in the mail and as a bonus, your child will receive a collectible Brady Club sticker!

When you order a copy of Nico’s Lunchbox -- the first of it’s kind children’s storybook about a child with HAE -- we will include a FREE Learning Activity Guide filled with fun activities and lessons that complement the book.

Nico’s Lunchbox is the first book of the Nico’s series. The second book, Nico’s Surprise, will be available soon!

If you would like to order a copy of Nico’s Lunchbox or already have a copy, and would like us to send you a FREE Activity Guide, email lisa@haea.org with your request.

Spring 2021 Scholarship Applications are now open!

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, so please take advantage of this opportunity, and complete your application before September 30.

August’s #BeyondHAE Podcast episodes focus on how to prepare to go back to school. Whether you are returning to in-class learning, or learning from home, it’s important to think ahead and create a plan to manage your HAE and school.

#BeyondHAE Podcast (Advocating for Yourself at School)

Episode 13 is hosted by Gabriella, who talks about why it is important to speak up for yourself at school. While it’s not always easy to talk to the school’s administration about your HAE, it’s important.

Podcast BONUS Episode (Back to School Tips from the HAEA YLC)

This special BONUS episode of the #BeyondHAE podcast is a roundtable discussion with the HAEA Youth Leadership Council. Listen to members of the HAEA Youth community as they share some of their back to school tips and tricks.

It’s back to school season, and while school may be different for many children this year, it’s important to think ahead. One of the most important ingredients to a successful school year is an effective partnership between the student, parents, and the school. Working with your child's school is critical to ensuring that everyone is on the same page, and knows what to do when there are unplanned absences or an HAE attack at school. Our guest speaker, Lisa Layera is a mother and advocate for her three children who all have HAE. Lisa shared some of the lessons that she has learned over the years to foster a meaningful and fruitful partnership with her children’s school.

Message from BioCryst

APeX-S, a study of an investigational oral medication for preventing HAE attacks in patients 12 and older, has over 40 active trial sites across the US with more sites continually coming on board, including new ones in Colorado and Illinois. Despite COVID-19 complications, APeX-S trial sites are committed to continue study activities safely, including the provision of study medication and taking on new patients!

Message from Takeda

Takeda lifted the COVID-19 screening hold for the SHP643-303 BMA Study on June 24, 2020, and is now recruiting for the clinical trial. Though the Takeda hold is lifted, individual sites will comply with state and local guidelines and safety protocols for bringing patients into clinics. There are now 8 clinical trial sites actively enrolling with additional sites being activated soon.

If you have HAE type 1 or 2 or HAE with Normal C1, 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.

Do you need an HAE expert opinion?

The physicians at the US HAEA Angioedema Center at UCSD are a great resource for you and your local healthcare team to get the diagnosis and treatment plan that works best for you.

If you are interested in traveling to the US HAEA Angioedema Center but need travel assistance through the Chris Whalen HAEA Compassion Fund, please contact our health advocates.

Reach out to the US HAEA Health Advocates at 866-798-5598 if you need assistance with: insurance issues, finding an HAE expert physician click here, need to update your member information go here, want to join a virtual support group contact Troyce Venturella here, or just have an HAE related question to ask click here.

HAEA Patient Health Advocates are here for you!

Plan a fun night to meet other HAEA members of your community! The HAEA Virtual Meet and Greet Events are a perfect way to reach out and meet other people affected with HAE and their families. If you are interested in participating in an HAEA Virtual Meet and Greet and connect with people from your area, please check out the HAEA Events Calendar, or reach out to Mike Mallory at mikemallory@haea.org.

“It is a wonderful way to communicate with people outside of the standard means usually available, and very personal but not embarrassing. ” -Mary B.

Through these events, you and your family members or caregiver can: Learn about HAEA programs and services available to you

• Get to know the HAEA staff
• Ask questions about managing HAE from a patient or caregiver perspective
• Meet others in the HAE community

UPCOMING HAEA VIRTUAL MEET & GREET EVENTS

HAEA Virtual Meet & Greet Texas - Wednesday, August 12, 2020, at 6:00 PM CDT

Hat day! Wear your favorite hat to the meeting.

REGISTER HERE!

HAEA Virtual Meet & Greet Salt Lake City - Tuesday, August 25, 2020, at 6:00 PM MDT

Scenic Background! Add your favorite scenic background photo to your meeting background.

REGISTER HERE!

Participants will receive an HAEA Goodie bag after the event!

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

It is important for kids and teenagers with HAE to communicate to others when they feel an attack coming. This does not come naturally to most children, and often takes time and practice. This Youth Edition Webinar will provide encouraging tips to kids and teens on how to be assertive about their needs.

Link: https://haea.zoom.us/j/93711778173

Phone Number: +1 646 558 8656 (Webinar ID: 937 1177 8173)

Link Webinar: https://haea.zoom.us/j/93011909355

Phone Number: +1 646 558 8656 (Webinar ID: 930 1190 9355)