US Hereditary Angioedema Association


IN THIS ISSUE
Protect Access to Life-saving HAE Treatments by Joining the HAEA Grassroots Advocacy Network Take Advantage of the 2024 Scholarship Opportunities for People with HAE The HAEA’s Remarkable Impact on Improving Our Community’s Health and Well-Being is Highlighted in the 2023 Annual Report Music Transforms Lives: CMF Scholarship Help Your Child, Teen, or Young Adult Cope with HAE by Ordering an HAEA Cares Kit	Get Expert Advice to Prevent Caregiver Burnout: Read the HAEA Community Blog 14-Year-Old Caroline Shares A Day In Her Life: Listen to the #BeyondHAE Podcast Make Connections and Get the Support You Need by Participating in the HAEA Care Groups Clinical Trial Updates HAEA Events Calendar Social Media Snapshots

Protect Access to Our Life-saving HAE Treatments by Joining the HAEA Grassroots Advocacy Network

Maintaining and even improving the availability of HAE medicines will only happen through fierce and well-organized grassroots advocacy. When the HAEA community joins together to collectively voice their needs, real change can occur.

Take Action Today By:

Joining the HAEA Grassroots Advocacy Network! Members of the network receive email action alerts and updates on federal and state advocacy issues. If you would like to register to be a part of the Grassroots Advocacy Network, please visit the link here.
Watching our most recent advocacy webinar: 2024 Welcome to Congress and Legislative Update. You can watch a recording of the webinar here.
Sending a letter on current HAE healthcare-related issues, like the Safe Step Act and the HELP Copays Act.

We need your help to ensure that legislators are aware of the needs of the HAE community!

Take Advantage of the 2024 Scholarship Opportunities for People with HAE

The highly successful Pam King HAEA Scholarship Fund has helped well over 500 students achieve academic goals by reducing the financial burden associated with higher education. The fund's undeniable impact on the lives of students suffering from HAE has prompted us to initiate another scholarship fund: the HAEA Scholarship for Aspiring Healthcare Professionals. The details for each scholarship program are presented below.

Pam King HAEA Scholarship
Are you planning to attend a college or university in the Fall of 2024?

The application period for the Pam King HAEA Scholarships is currently underway. The application, including required documents, must be submitted before, or on March 31, 2024.

Key Information:

Application Period: February 1, 2024 - March 31, 2024
Eligibility: Individuals with HAE between the ages of 17-30
Membership Requirement: Scholarship applicants must be members of the US HAEA

PLEASE NOTE: The Pam King HAEA Scholarship application is a multi-step process that requires applicants to work with their school to submit requested documents. Make sure to submit your online application before the deadline to allow enough time to complete all requirements.

Apply HERE for the Fall 2024 Pam King HAEA Scholarship!

HAEA Scholarship for Aspiring Healthcare Professionals

Last month, we announced a separate HAEA Scholarship program for students interested in pursuing careers in healthcare-related fields.

All students with an HAE diagnosis and a concentration in a medical or healthcare-related field, intending to become a healthcare professional, are encouraged to apply. Don't miss this incredible opportunity to turn your passion for healthcare into a reality!

Make sure the application and required documents are submitted on or before March 31st.

Key Information:

Application Period: February 1, 2024 - March 31, 2024
Eligibility: Individuals with HAE between the ages of 17-30
Membership Requirement: Scholarship applicants must be members of the US HAEA

Apply HERE for the Fall 2024 Aspiring Healthcare Professionals Scholarship!
Please Note: All applicants who apply to the HAEA Scholarship for Aspiring Healthcare Professionals will automatically be considered for the Pam King HAEA Scholarship.

For more information about the Pam King HAEA Scholarship Program or the HAEA Scholarship for Aspiring Healthcare Professionals, please contact scholarship@haea.org

The 2023 HAEA Annual Report highlights the impact of what we accomplished together during the last calendar year. We closed the books on 2023 with fond recollections of a shared sense of community felt by the 1,200 HAEA friends who attended our National Summit in July.

We can all be proud that our united and vibrant community has transformed a formerly catastrophic unmet medical need into a condition that can be well managed from a choice of 8 FDA approved therapies. Just as important, the strength of your continued engagement has kept pharmaceutical companies interested in HAE, and there are 9 new treatments under various stages of clinical development.

As you will read in the annual report, participation in our events, advocacy programs, and social media outlets surged in 2023, reflecting our community’s durable commitment to continuously improving the health and well-being of people with HAE.

Access the 2023 HAEA Annual Report here.

Music Transforms Lives: CMF Scholarship

We are excited to share an exciting opportunity that aims to bring the transformative power of music into the lives of families coping with an HAE diagnosis. The HAEA is offering scholarships for individuals between the ages of 5 and 25 with a confirmed HAE diagnosis to participate in virtual music therapy sessions with The Children’s Music Fund (CMF).

The program is run by CMF, a nonprofit organization founded by HAE treating physician, Raffi Tachdjian, MD, MPH. Dr. Raffi’s experience as a pediatrician led him to develop music therapy as a fun and highly effective way to help children, teens, and young adults deal with the pain, fear, and anxiety associated with HAE.

How to Apply

The scholarship is available for HAEA members between the ages of 5 and 25 with a confirmed HAE diagnosis. The application period is open and the deadline for submissions is March 30, 2024.

To apply or learn more about the CMF scholarship opportunity, click HERE or contact Lisa Facciolla at lisa@haea.org

Help Your Child, Teen, or Young Adult Cope with HAE by Ordering an HAEA Cares Kit

Navigating life with HAE is uniquely challenging for our young warriors. To offer support during these times, the HAEA Cares Program offers personalized support kits tailored for children, teens, and young adults diagnosed with HAE. These kits are delivered directly to their doorsteps to brighten their days with joy, surprise, and a comforting message that they are not alone in their journey.

Inside each HAEA Cares Kit, recipients will find carefully curated materials designed to make their HAE experience more manageable. Our goal is to empower young heroes, fostering resilience, understanding, and a sense of community. To order an HAEA Cares Kit for your child and explore the resources within, click the link below. Together, let's ensure our young warriors have the support they need to thrive with confidence.

Request a Cares Kit Today!

At the 2023 US HAEA National Summit Caregiver Appreciation Night, Jennifer Hartstein, PsyD, shed light on the vital topic of "Caring for Caregivers." In her insightful presentation, Dr. Hartstein emphasized the importance of caregivers prioritizing their own well-being while tending to the needs of their loved ones. Building upon her valuable insights, this article aims to provide additional tips and tricks to help caregivers avoid burnout and maintain their own health and happiness.

Read the article HERE!

Would you like to share a unique story or opinion about your HAE? The HAEA Community Blog is the ideal platform to share your personal story with other members of the HAE community. You can share your story HERE!

Podcasts

14-Year-Old Caroline Shares A Day In Her Life: Listen to the #BeyondHAE Podcast

Youth Podcast series

Dive into the latest episode of the #BeyondHAE podcast as we continue our Day in the Life interview series, featuring special guest, 14-year-old Caroline. Diagnosed with HAE as a young child, Caroline shares her journey of managing HAE, discussing how she navigates attacks, administers medication, and handles situations as they arise, all while juggling middle school and pursuing her extracurricular passions. Join our host, HAEA Youth Leader Carlie, as she delves into Caroline's experiences growing up with HAE.

Listen to the Podcast here!

#BeyondHAE is available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!

Make Connections and Get the Support You Need by Participating in the HAEA CARE Groups

The HAEA CARE Groups are virtual meetings that offer opportunities for our community to share experiences and support each other. Below are the topics and meeting times on Zoom for the next few months.

Upcoming HAEA CARE Groups
March topic: Ways to show appreciation for our HAE knowledgeable physicians.
Dates:

Tuesday, March 19, 2024 - 10:00 PM ET / 7:00 PM PT

April topic: How to build a successful self-care routine.
Dates:

Wednesday, April 3, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, April 11, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, April 16, 2024 - 10:00 PM ET / 7:00 PM PT

May topic: Celebrating hae day :-) and tips for sharing our unique HAE stories.
Dates:

Wednesday, May 1, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, May 9, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, May 21, 2024 - 10:00 PM ET / 7:00 PM PT

June topic: Self-care activities in the great outdoors.
Dates:

Wednesday, June 5, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, June 13, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, June 18, 2024 - 10:00 PM ET / 7:00 PM PT

Interested in joining one of these monthly support groups? Contact the HAEA Health Team for more information by calling 866-798-5598 or emailing an advocate at health@haea.org.

Clinical Trial Updates

2024 continues to bring unfortunate and unprecedented circumstances that threaten access to HAE medicine for some members of our community. Clinical trials can offer an open-label extension, which means free access to HAE medicines being studied until they are approved and commercially available. Participation in a clinical trial also provides regular touchpoints with an HAE physician throughout the trial period and allows you to have a more active role in your health care.

If you are interested in learning more about the clinical trials currently available, please contact the HAEA Research Team at research@haea.org, or by phone at 866.798.5598. We can review the trials currently in recruitment, and provide a referral to the site coordinator who can answer any additional questions you may have.

HAEA Events Calendar

Thursday, March 28th, at 7:00 PM ET / 4:00 PM PT

HAEA Treatment Education Series Webinar: Cell-fies and Self-Advocacy: Discovering/Finding/Elevating Your Voice as a Young Person with HAE

Speakers: Dakota Fisher-Vance, Global Patient Advocacy Associate Director, BioCryst Pharmaceuticals
Sponsored by: BioCryst
Link Webinar: https://haea.zoom.us/j/83094902211
Phone: +1 312 626 6799
Webinar ID: 830 9490 2211

2024 HAE IN-MOTION® IN-PERSON COMMUNITY EVENT - DALLAS, TX

Date: Saturday, April 20, 2024
Time: 10:00 AM - 2:00 PM CT
Location: Generations Park at Boys Ranch (Lake Pavilion)
2801 Forest Ridge Drive
Bedford, TX 76021

Upcoming HAEA CARE Groups:

Tuesday, March 19, 2024 - 10:00 PM ET / 7:00 PM PT
Wednesday, April 3, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, April 11, 2024 - 11:00 AM ET / 8:00 AM PT

If you are interested in joining a virtual support group, please reach out to an advocate by calling 866-798-5598 or emailing health@haea.org.

HAEA Meet and Greet Lunch in Virginia

Date: Saturday, April 27, 2024
Time: 12:30 PM - 2:30 PM ET
Location: Wildfire Tysons
2001 International Dr, McLean, VA 22102

HAEA Community Connections Lunch in Cleveland

Date: Saturday, April 13th, 2024
Time: 12:00 PM - 2:00 PM ET
Location: TownHall Ohio City
1909 West 25th St. Cleveland, OH 44113

Social Media Snapshots

Don’t miss the latest HAEA news and announcements, connect with us on social media!

Update your HAEA membership information HERE!


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The HAEA is an advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote HAE education and awareness. We provide personalized services to address the unique needs of people with HAE and their families, which includes helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade our community’s quality of life through improving diagnosis and knowledge of the condition, and encourage an individualized approach to selecting an optimal treatment. The HAEA is product and company neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies. Copyright © (2024) US Hereditary Angioedema Association All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form by any means, mechanical, electronic, photocopying, recording, or otherwise without the prior written permission of the US Hereditary Angioedema Association. For information, send an email to info@haea.org.