The Virtual Summit Series was a great success with over 1,200 HAE friends connecting online to interact and learn about the latest and most significant issues facing people with HAE.
Throughout the months of August and September, all of the Virtual Summit Series Programs will be available by visiting the HAEA Virtual Summit Portal. You don’t want to miss out on viewing these highly informative sessions! You can access all of the US HAEA Virtual Summit Series recordings here: https://virtual.haea.org/user/login/
Thank you to all the participants, speakers, organizers, and sponsors who made the US HAEA Virtual Summit Series possible. We look forward to seeing you at the next HAEA event!
Our community has always enthusiastically supported research conducted by the Hereditary Angioedema Association (HAEA). This fall, we are asking people with HAE to participate in a ground-breaking research study that looks to redefine how HAE and other chronic conditions affect overall Quality of Life.
The questionnaires currently used to measure Quality of Life do not capture the full impact of how HAE affects people with the condition. Your participation in this survey will help us design a more comprehensive and accurate HAE Quality of Life (QoL) tool that will help our community, as well as insurance providers, understand the true economic value of HAE therapies.
To ensure the success of this research project, as well as develop and validate the instrument, we need all people with HAE to take part in this two-part survey to gather data and valuable insights that will enable us to measure Quality of Life for those with a chronic condition like HAE. We will share the study findings with the HAEA and scientific communities once completed.
The success of this HAEA-initiated research study depends on the involvement of all people with HAE!
To participate in this research study, or if you would like additional information, please reach out to email@example.com.
Every year, the HAEA organizes a large group of people with HAE and caregivers who visit over 50 strategically selected House and Senate offices. During these visits, HAEA friends showcase their advocacy skills by presenting the HAEA community's key public policy goals to legislators. Our experience shows that legislators respond when we take the time to explain the needs of the HAEA community.
Unfortunately, COVID-19 prevents us from traveling to Washington, D.C. for in person meetings. However, we can still engage our elected officials to support the HAEA’s proposed legislation called “The Access to Marketplace Insurance Act” as well as additional funding for research at NIH, which is vital for the continued advancement of new and enhanced therapies.
Please join us for the 2021 HAEA Virtual Capitol Hill Day on Friday, October 15 at 1:00 PM ET.
The US HAEA leads a nationwide advocacy movement to protect the health and well-being of people with HAE. Our HAEA grassroots advocacy program strives to unite people affected by HAE and their families in the fight for full and continued access to HAE therapies, financial support for treatment, and funding for research.
We invite you to watch the HAEA Webinar Brief: Coverage, Access, and Insurance with Dane Christiansen, Executive Vice President of the Health and Medicine Counsel of Washington, and Jim Romano, Executive Director of the HAEA-sponsored United for Charitable Assistance Coalition. Dane and Jim answer questions regarding legislative and regulatory issues that affect the HAEA community’s access to and reimbursement for HAE medicines.
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 continuously working to understand and fulfill 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.
That is why, we kindly ask that you take a quick survey regarding your preferences for our future programs and activities. Please stay healthy and safe!
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 within the United States with a confirmed HAE diagnosis pursue their academic goals by reducing the financial burden associated with higher education.
“I am extremely grateful to be awarded the Pam King HAEA scholarship. It is incredibly helpful in allowing me to obtain the most out of my education. This award has given me the confidence I need to attain and achieve my educational and personal goals, and for that I am truly thankful.” - Kira, Pam King HAEA Scholarship Recipient
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.
As your child heads back to school this year, the HAEA would like to remind you that we are here to support you and your family every step of the way.
We invite you to join us in raising HAE awareness at your child’s school by ordering a copy of book one of the HAEA’s Children’s Book series, Nico’s Lunchbox, to donate to your child’s school library.
Nico’s Lunchbox follows eight-year-old Nico who helps his friends learn about HAE and, in the process, he learns a lot about himself.
It's EASY and FREE to participate!
Complete the form by providing some information about you and your child, the school's address, and the name of the librarian. Once we receive your order, we will send a FREE copy of Nico's Lunchbox to the school librarian and send you a note once mailed.
This opportunity is only available for a limited time. Place your order between now and September 30th to take advantage of this special offer!
Fall brings many changes including cooler weather and changing of the leaves, a new school year, hay rides, changing the batteries in your smoke detectors, and of course, prior authorizations for your HAE medications! For most of us, it’s also the time of year to select or renew our insurance plans to ensure we have continued access to healthcare and our HAE medications for the following year.
While this decision can often seem overwhelming, the HAE Health Advocates are here to help you through each step of the process.
We offer a comprehensive list of services to assist people with HAE, including:
As fellow people with HAE and caregivers, we understand that some days are easier than others, but we are here to help you through the challenges.
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.
Take a breather and seek companionship for your mental health!
The end of summer and return to work and school routines can be quite stressful. One thing we need to do for ourselves mentally is pause, take a few deep breaths, and decompress from all the distractions around us. Our mental health is just as important as our physical health at all stages of life.
You are not alone! Consider joining one of our HAEA Support Groups to connect with others. The HAEA Support Groups are held during the first Wednesday of every month at 7:30pm ET and the second Thursday of every month at 11am ET. Interested in joining? Please contact HAE Health Advocate, Troyce Venturella, at firstname.lastname@example.org for more information.
November is National Caregivers Month! To celebrate, the US HAEA will recognize caregivers whose empathy and caring spirit make a true difference in the lives of individuals with HAE through our Caring for Caregivers program.
Caregivers come in all forms. They can be supportive family members, friends, caring direct care staff, and others. They offer help, support, and kindness to others.
Have you been impacted by an outstanding caregiver or care team who helps you to manage your HAE?
The HAEA invites you to nominate a caregiver or care team who has helped you throughout your HAE journey through the HAEA’s Caring for Caregivers program. As a special token of appreciation, honorees will receive a special gift and kind note in November to thank them for their support as a caregiver and distinguish the care they’ve given to their loved one.
Do you have a caregiver in your life you would like to recognize? Let us know by clicking the link here!
For more information, please contact HAE Advocate, Lisa Facciolla, at email@example.com.
The HAEA is pleased to recognize dedicated HAEA Healthcare Hero Eric J. Schenkel, MD!
“Dr. Schenkel is an all around great doctor who really listens and cares about his patients. He takes the time to understand what Hereditary Angioedema (HAE) is all about and how it affects someone who is living with it. He tries to find the best approach and medication for that particular patient and their family. He is a #1 doctor in my book and I am very fortunate to have him as my doctor!” - Marcelle
Thank you Dr. Schenkel for your dedicated service to the HAE community!
Recognize your HAEA healthcare hero through the HAEA Healthcare Hero Recognition Program! Those who are nominated will receive a personalized award to thank them for their dedicated service to the HAE community!
Nominate your HAEA Healthcare Hero HERE!
For more information, please contact HAE Advocate, John Williamson, at firstname.lastname@example.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 17: In this episode of the HAE Speaks podcast Antonio and Jack talk about their DIY event. They discuss how the idea started and their game plan to make the event a success.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to Mike Mallory at email@example.com.
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 31 of the #BeyondHAE podcast is hosted by Karissa who shares her personal HAE story of perseverance and hope. Karissa experienced years of misdiagnosis and had moments when her hope for a better future was dissipating, but Karissa never gave up. She pushed forward, and today continues to reach her goals and pursue her dreams.
Get ready for the school year with the HAEA’s back to school resources! As your child heads back to school this year, the HAEA would like to remind you that we are here to support you and your family every step of the way!
Did you know that we have resources designed to help you prepare for a successful school year? Click here to view and print our Back to School Guide for students with HAE.
These resources include:
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 through 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 firstname.lastname@example.org.
The US HAEA is currently assisting CSL Behring in recruiting people with HAE 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).
People diagnosed with HAE (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 email@example.com to see if there will be an active clinical trial site in your area.
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 firstname.lastname@example.org.
What would you tell someone who is considering attending a future HAEA Meet & Greet?
“They are full of great information, and you are able to connect with others. I find these get-togethers so helpful for my heart and mind. It feels great to share and talk with others that know exactly what you are going through. I am always able to take away something new I didn’t know prior." --Sarah H.
Tuesday, September 21st, 6:30 PM ET
Tuesday, October 19th, 6:30 PM CT
Register today to receive a FREE HAEA swag bag after the event!
For more information, please contact Mike Mallory at email@example.com or 513-858-9370.
Link Webinar: https://haea.zoom.us/j/84047111011
Phone Number: +1 646 558 8656 (Webinar ID: 840 4711 1011)