Thanks to HAEA community’s generous donations to research, we are working hard to sponsor, produce, and disseminate scientific information that leads to better care for people with HAE.
To that end, we’re pleased to announce that the HAEA joined forces with the prestigious medical journal Allergy and Asthma Proceedings and HAE physician-experts to develop a special supplemental edition on HAE diagnosis and management. The just published (November 1, 2020) supplement contains 14 peer reviewed articles on a range of vitally important HAE topics, and has been mailed to over 40,000 health care providers including a targeted list of allergy-immunology fellows and specialists in training.
Kids, teens, and young adults with HAE face special challenges navigating life while dealing with a debilitating rare disease. In response to the global COVID-19 pandemic, the HAEA has found a way to seamlessly continue providing its programs and services in a virtual format. The shift to online communication has been embraced by the youngest members of the community, and provides special opportunities to engage them in programs that promote HAE-specific learning and advocacy training. Investing in our HAEA Youth ensures that our future leaders will be equipped to continue advancing the HAE cause for generations to come.
This year, we are asking you to help us inspire, empower, and engage our HAEA Youth by donating to the HAEA Youth Programs. Let’s show our support by investing in the amazing young people in the HAEA community.
Your charitable donation of $20, $50, $100, or hopefully more, will support the following special Youth Programs:
Donate $100 to the Pam King HAEA Scholarship Program and help a college student with HAE. The HAEA provides scholarships of up to $2,500 twice a year.
Donate $50 to support the highly successful Youth Advocacy Program that teaches young people with HAE how to engage with elected representatives and advocate for themselves and the needs of the HAE community.
Donate $20 and we will send copies of the HAEA Children’s Book Series to local school libraries to help raise awareness about HAE. Your generous tax-deductible contribution is an investment in the future to inspire, empower, and engage the next generation of HAEA leaders.
To support the youngest members of our community, please access the #Families4HAE crowdfunding page here!
Or send a check to:
Hereditary Angioedema Association
10560 Main Street, Suite PS40
Fairfax City, VA 22030
Your generous tax-deductible contribution will help inspire, empower, and engage the next generation of HAEA leaders.
Dear HAE Community,
I would like to begin by expressing my appreciation to all of you who have participated in the COVID-19 survey. You have once again displayed your dedication to helping all who are affected by HAE.
Each of your individual efforts have been essential to achieving the progress that has been made and is yet to come.
That is why today, I am making a personal appeal to all people with HAE and members of their households to participate in this vitally important research that will answer two important questions:
I know I can count on everyone who has not yet taken the survey (people with HAE and every member of their households) to make a 10-minute contribution to the science of HAE.
In addition, there are over two hundred people who started the survey, but for one reason or another were unable to complete it. I urge you to go back to the link and complete the survey.
Please act now so we have a sufficient number of survey responses to ensure the scientific validity of our research.
Also, if anyone who has already taken the survey is unfortunate enough to contract the virus, I kindly ask that you go back to the link and use the code you were provided to update your survey response.
I am confident that, collectively, we can meet the challenge to answer the looming questions surrounding COVID-19 and HAE.
I thank all of you and look forward to the day when we can once again meet in person at a future HAEA sponsored event.
Sandra Christiansen, MD
Professor of Medicine
Director of Translational Research
US HAEA Angioedema Center at UCSD
Last month, the HAEA community joined forces and participated in the 2020 HAEA Virtual Capitol Hill Day. Together, we are sending a powerful message in favor of health care coverage, charitable assistance programs, and access to therapies to our elected leaders.
We would like to thank everyone who joined us for the 2020 HAEA Virtual Capitol Hill Day event, but if you missed it, you can still participate by (1) watching the recording of the live event, and (2) engaging in direct outreach with your congressional representatives to ask for specific HAE-related patient protections and action.
If you would like additional information on how to get in touch with your local legislator, or are interested in participating in the HAEA’s volunteer grassroots program, please contact John Williamson at email@example.com.
As we celebrate Thanksgiving this month, we are grateful to you for allowing us to be a part of your family and your journey. Lending you support is a privilege and a blessing. We are thankful that we are able to celebrate your triumphs and help you through your rough days. We treasure our moments when we are together in-person or virtually, and when we get the chance to speak with you over the phone. Together, we celebrate each milestone towards a healthier, happier, and freer life. We learn from you everyday, and your lessons guide us and help us to better serve you. We look forward to sharing many more Thanksgivings with our HAEA families.
From the bottom of our hearts, thank you!
Insurance Denials and Appeals
Health insurers often put up obstacles that delay or block access to and reimbursement for the incredibly effective HAE medicines that our community has worked so hard to get approved. Our experienced and committed HAEA Health Team is ready to assist you with any insurance related challenges you may be experiencing.
Some important steps you can take during your appeal process:
Reach out to the US HAEA Health Advocates at 866-798-5598. Whether you need assistance with: insurance issues, finding an HAE expert physician, need to update your member information, want to join a virtual support group , or just have an HAE related question to ask, HAEA Patient Health Advocates are here for you!
Did you know that the HAEA hosts several monthly virtual support groups for HAE patients and caregivers? Everyone is welcome to join!
If you are struggling with HAE, or would like to share with others your ways to cope and manage stress, the HAEA support group is a great resource for you!
Please contact firstname.lastname@example.org for more information.
The US Food and Drug Administration (FDA) has approved a routine prophylaxis medication, HAEGARDA® (C1 Esterase Inhibitor Subcutaneous [Human]), to prevent HAE attacks in patients six years of age and older.
Recently, the FDA made an important announcement that HAEGARDA® (C1 Esterase Inhibitor Subcutaneous [Human]) has been approved for routine prophylaxis to prevent Hereditary Angioedema (HAE) attacks in pediatric patients 6 years of age and older. The treatment was previously prescribed for patients 12 years of age and older.
We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAEA community. The podcast series tells the stories and life experiences of individuals affected by HAE, and focuses on relevant topics, explained simply through friendly and open conversations. Make HAE Speaks a regular addition to your podcast playlist and listen today on your favorite platform!
Episode 7: In this episode of HAE Speaks we connect with Marna and Adina to learn more about the HAEA Support Groups.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to email@example.com.
“I may not look sick, but my Hereditary Angioedema (HAE) is still real.”
Hereditary Angioedema (HAE) can present unique challenges as a chronic illness. This is especially apparent when people who are unfamiliar with HAE don’t understand that just because patients don’t look “sick”, symptoms may be there.
The HAEA spoke with a patient, ReyJeanne, to talk about her experiences:
“I once told a professor that I thought my throat was closing. They told me I needed a ‘better excuse’ to leave class. I may not look sick, but my HAE is still real.”
Unfortunately, this is an all too relatable experience for many people with HAE. Yet, while some people might not understand, it does not diminish your diagnosis or that of a loved one.
As a patient or caregiver, there are actions you can take when someone of authority questions your HAE symptoms or those of your loved one. Following are some simple things you can do to educate others about HAE:
No matter what happens, remember that the HAEA is here to help.
Reach out to the US HAEA Patient Advocates at (866) 798-5598 for assistance or visit our website, www.haea.org, for more information.
Every month throughout 2020, we spotlight a different patient and their unique HAE story. This month we are spotlighting Hailey. We hope you enjoy the following story during the month of November.
“I was diagnosed with Hereditary Angioedema (HAE) 18 years ago, when I was three years old. I was playing outside on the beach and a horsefly bit my forehead. The bite caused me to swell more than anyone should. At that moment, my mother knew that I had HAE. The only reason she knew was that she herself has HAE, along with my grandmother and uncle. In a way, I was lucky to have other people in my family who have it, and that my attacks were easily identifiable. From that day on, my attacks started, mainly in my abdomen and hands. At this point in time, there were no accessible treatments, so, whenever I had an attack, I was sent to the hospital for an IV flush of saline.
My biggest challenge with HAE was figuring out how to manage school and my illness. I had to miss a lot of time at school when I wasn’t on any treatment. I had to make up a lot of material, and I would miss a lot of school functions. I didn’t get to experience all of the things young kids normally do. Also, when I was in a clinical trial for the medication I take now, I was applying to college. My trials were conducted in New Jersey, and I had to consider if I would be able to continue being part of the trial if I ended up in Canada for school. For me, the trials were vital to my health because I was getting amazing treatment, and to everyone else’s health who was struggling with HAE.”
We understand that learning how to manage clinical trials, finding the right medication, and dealing with swelling attacks can be difficult. The HAEA is here for you!
Please contact an HAEA Patient Advocate for assistance at (866) 798-5598, or visit our website at www.haea.org if you would like to share your story.
Has your child submitted their story to the “Submit Your Story” activity on the Brady Club website? It only takes a couple of minutes to complete. Kids who submit their stories will receive a FREE Super Brady t-shirt in the mail and their submission will be printed in an upcoming edition of the Brady Club Activity Book! Your child will be thrilled to see their photo and story printed and sent to them in the mail!
It’s quick and easy:
The HAEA is always thinking of our youngest community members. We know that learning to cope with HAE isn’t easy and presents unique challenges. To help kids cope with these challenging times we developed personalized comfort kits that we mail out directly to them. We’re sure it’ll brighten their day.
HAE Comfort Kits are available for children between the ages of 2 and 13, who reside in the United States and have a confirmed HAE diagnosis.
One kit per child and the child must be a member of the US HAEA to qualify.
Email Lisa Facciolla at firstname.lastname@example.org to request a kit for your child.
The second book in the HAEA Children’s Book Series, Nico’s Surprise, is now available!
If your family enjoyed reading Nico’s Lunchbox, you’ll LOVE Nico’s Surprise. The HAEA Children’s Book Series is a timeless resource for children learning to cope with their HAE.
“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! When you order a copy of any of the books in the HAEA Children’s Book Series, we will include a FREE activity guide to complement the book. Your kids will enjoy hours of fun as they go through the various activities!
For more information or questions, please contact email@example.com.
The #BeyondHAE Podcast series is a podcast produced BY young people with HAE FOR young people with HAE. Hear stories from young people affected by HAE, as they share the ways that they have learned to navigate life with HAE or support a diagnosed family member.
Episode 20: is all about telling people in your life about your HAE. HAEA Youth Leadership Council members discuss everything from telling friends, coaches, and teachers about HAE. Sometimes it's hard for our peers to understand, but other times, our friends surprise us with their empathy and support.
Episode 21: Noah is an athlete and in this episode, he talks about what he does to make sure that HAE doesn't stop him from participating in the sports he loves.
The HAEA actively promotes research that leads to more effective medicines, better clinical care, and enhanced quality of life for all affected by HAE. Through the years, we have gained access to various HAE therapies, but we continue to work on innovative, improved treatments.
How can you pave the path for future generations?
Join the US HAEA’s Research Registry and provide researchers with the biosamples and information needed to conduct critical research to unlock the remaining mysteries of HAE, and find innovative therapies and potential cures. Who can join? Anyone with HAE or anyone who has a blood relative with HAE.
Already a member?
Thank you for being part of this very important cause! Be sure to fill out your Quarterly Reports and ensure your Attack Reports are updated because this information is vital to ongoing research!
Advance HAE App - 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. New feature! You can now 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.
Are you currently using Ruconest as part of your treatment plan?
HAEA friends who are prescribed the HAE medicine Ruconest can join the US HAEA Scientific Registry and participate in the Ruconest Safety Registry. Joining will help fulfill a regulatory requirement for information on attacks treated with Ruconest.
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. BioCryst recently announced a clinical trial protocol change that allows physicians to request access to this investigational medicine on behalf of people with HAE who do not have access to the product through a clinical trial.
Message from Takeda
Takeda lifted the COVID-19 screening hold for the SHP643-303 BMA Study, and is now recruiting for the clinical trial. 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 firstname.lastname@example.org to see if there will be an active clinical trial site in your area.
Link Webinar: https://haea.zoom.us/j/92962097221
Phone Number: +1 646 558 8656 (Webinar ID: 929 6209 7221)
Plan a fun night to meet other HAEA members from your community! The HAEA Virtual Meet & Greet Events are a perfect way to reach out and meet other people affected by HAE and their families in your area. If you are interested in participating in an HAEA Virtual Meet & Greet, and connect with people close by, please check out the HAEA Events Calendar, or reach out to Mike Mallory at email@example.com.
What would you tell someone who is considering attending a future HAEA Meet & Greet?
“I enjoyed getting to see my HAEA family, especially during this secluded time due to COVID-19. I loved the HAEA goodie bag! It was packed with great information and reading material for myself, and for me to share with my family. And of course, the goodies inside were a wonderful bonus. Thank you all for everything you do!” patient Allie M.
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
Kansas City HAEA Virtual Meet & Greet
Tuesday, November 17, 2020, 6:30 PM CST
Seattle HAEA Virtual Meet & Greet
Tuesday, December 1, 2020, 6:30 PM PST
Participants will receive an HAEA Goodie bag after the event!
For more information, please contact HAEA Patient Advocate, Mike Mallory at firstname.lastname@example.org or (513) 858-9370.