US Hereditary Angioedema Association


IN THIS ISSUE
Brighten the Future for the HAE Community this hae day :-) on May 16th! Kailani Shares "A Day In Her Life as a Caregiver" - Listen to the #BeyondHAE Podcast Read the HAEA Community Blog: “If You Asked Me About My Attacks” Educating Medical Professionals on HAE Through the CME Program	Use hae day :-) as an Opportunity to Share Your Story in the HAEA CARE Groups Clinical Trial Updates HAEA Events Calendar Social Media Snapshots

Brighten the Future for the HAE Community this hae day :-) on May 16th!

hae day :-) 2024 is special because we are commemorating the HAEA’s 25th Anniversary as we look forward to an even brighter future and take action to demonstrate our

unity as a community,
willingness to participate in activities that protect and expand access to medicines that we fought so hard to get approved, and
support programs and services that will endure for future generations of people with HAE and their families.

Show Your Support for the Future of HAE!

Step 1: Capture the Moment
Snap a photo with your poster, and capture the spirit of protecting future generations. Don't forget to showcase your HAE swag – let your personality shine!

Step 2: Take Action and Raise Awareness:
Share your photo on our hae day :-) photo wall by uploading it below. Then post it on social media using the hashtag #haeday. Every post matters, and your contribution strengthens our united voice! Be sure to upload your photos to the HAEA website here: https://www.haea.org/pages/p/hae_day

Step 3: Invest in the Future
We are thrilled to announce the launch of the HAEA Endowment Fund, a pivotal step towards securing a sustainable and enduring future for the HAEA and our mission.

The HAEA Endowment Fund has been established to create sustained financial support that secures the HAEA’s enduring impact on the community for years to come, including:

future programming to unite people with HAE, their families, physicians, industry partners, insurance and pharmaceutical companies,
legislative efforts to ensure access to modern HAE therapies,
research for better treatments and ultimately, a cure, and
ongoing support services for all people suffering from HAE, no matter their stage of life or unique circumstances.

Make a contribution to the HAEA Endowment Fund by clicking the donate button below.

Donate here!

Podcasts

Kailani Shares "A Day In Her Life as a Caregiver" - Listen to the #BeyondHAE Podcast

Youth Podcast series

Join us in the latest episode of the #BeyondHAE podcast, where Noah, an HAEA Youth Leader, engages in a heartfelt conversation with Kailani, a dedicated caregiver to her mother who has HAE. In this edition of the Day in the Life interview series, Kailani openly shares the unique challenges and victories experienced by young caregivers navigating the complexities of supporting their adult parents with HAE.

Listen as Kailani reflects on the transformative effects of her mother's reliable therapy, discussing the shifts in her caregiving role. She sheds light on how discovering the supportive HAEA community has not only impacted her family's journey but also inspired her to actively engage in HAE advocacy and awareness. Tune in to hear Kailani's empowering story, unveiling the resilience and dedication that define her role as a young caregiver.

Listen to the Podcast here!

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

HAEA Community Blog: If You Asked Me About My Attacks

Sometimes, we just need someone to ask us about our attacks. In honor of hae day :-), here’s what HAE Community member, Linda, would tell you if you asked about hers. Read more about Linda’s journey and the importance of managing attacks and finding support in this month’s HAEA Community Blog featured article!

Read If You Asked Me About My Attacks by clicking 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!

Educating Medical Professionals on HAE Through the CME Program

The US Hereditary Angioedema Association (HAEA) is a 10,500-member strong non-profit advocacy and research organization dedicated to improving the health and well-being of people with HAE. We provide a support network, offer a wide range of personalized services for patients and their families, and are committed to advancing clinical research.

The HAEA is pleased to offer the following free CME programs for Medical Professionals:

Update on HAE Diagnosis and Biomarkers - Approved for 0.5 CME Credit(s), ACPE contact hour(s) and ANCC contact hour(s).
Update on Emerging HAE Therapies - Approved for 0.5 CME Credit(s), ACPE contact hour(s) and ANCC contact hour(s).
Methodology for Designing and Validating a New HAE QoL Instrument - Approved for 0.5 CME Credit(s), ACPE contact hour(s) and ANCC contact hour(s).
Panel Discussions: Challenging Issues in HAE Diagnosis and Management - Approved for 1.5 CME Credit(s), ACPE contact hour(s) and ANCC contact hour(s).

All other healthcare professionals completing this course will be issued a statement of participation.

TARGET AUDIENCE
The program is designed to meet the educational needs of healthcare professionals involved in the diagnosis and/or management of people with Hereditary Angioedema (HAE).

JOINT ACCREDITATION STATEMENT

BioCryst Event

In support of improving patient care, this activity has been planned and implemented by RMEI Medical Education, LLC and the US Hereditary Angioedema Association (HAEA). RMEI Medical Education, LLC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

Release Date: April 1, 2024

Expiration Date: September 30, 2025

For more information or questions, please contact Hannah Carroll at hannah@haea.org.

Click HERE to participate!

Use hae day :-) as an Opportunity to Share Your Story in the HAEA CARE Groups

The HAEA CARE Groups aare virtual group meetings that offer opportunities for our community to share experiences and support others.

Storytelling can be Healing

“When you stand and share your story in an empowering way, your story will heal you and your story will heal somebody else.” – Iyanla Vanzant

Whether you are a person with the HAE, a caregiver, or both, everyone in the HAE community has a story to tell. In addition to being a powerful tool for advocacy and raising awareness of HAE, our voices can aid in healing from the emotional toll of having a chronic illness. Telling others about our experiences - like the struggle to receive an accurate diagnosis or challenges to accessing your medication - provides opportunities for our feelings to be validated. It also gives you the opportunity to reassure others that they are not alone in their own struggles. If you feel ready to share your story and you are not sure how, it is okay to start small with a personal platform like social media or talking to loved ones. A small gesture can make a big impact, and you never know how your story may help someone else!

Upcoming HAEA CARE Groups

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

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

July topic: Ways to make time for mindfulness.
Dates:

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

August topic: Relaxation tips and tricks.
Dates:

Wednesday, August 7, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, August 15, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, August 20, 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

What is a Clinical Trial?
Clinical trials are research studies conducted to evaluate whether a medicine to treat HAE is safe and effective in humans. Clinical trials are a critical part of drug development and are required before a treatment can be approved by the Federal Drug Administration (FDA) and become available by prescription.

What are the benefits of participating in a Clinical Trial?
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.

Following is a list of clinical trials currently underway. If you are interested in receiving more information on clinical trials, or are interested in participating in any of the trials listed below, please reach out to the HAEA Research Team at research@haea.org.

The RAPIDe-3 Trial

The US HAEA is currently assisting Pharvaris in recruiting people for the RAPIDe-3 trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational oral drug (deucrictibant) to relieve the symptoms of Hereditary Angioedema (HAE) attacks. This is a placebo-controlled study, and if you choose to participate you will take capsules to treat a total of two HAE attacks. The use of an approved on-demand medication to treat acute attacks is permitted and will be provided at no cost.

You may qualify for the RAPIDe-3 trial if you are diagnosed with HAE Type I or II and be between the ages of 12 and 75 years old, with at least two attacks in the past three months and have had experience using standard-of-care treatment to manage on-demand treatment for HAE attacks. After completing the RAPIDe-3 Study, participants may be eligible to join an open-label extension (OLE) study, and continue receiving deucrictibant to treat acute HAE attacks at no cost.

The ALPHA-STAR Trial

The US HAEA is currently assisting Astria Pharmaceuticals in recruiting people for the ALPHA-STAR trial, a Phase 1 study evaluating a new medicine (STAR-0215) for long acting prevention of HAE attacks. STAR-0215 is delivered subcutaneously once every 3 months or in some cases, even less frequently. This trial is not placebo controlled, so each participant will receive the trial medication.

You may qualify for the ALPHA-STAR study if you are 18 years of age or older and diagnosed with HAE Type I or II, have had at least 4 attacks in the past year, and are not on preventative therapy. Individuals currently on preventative therapy and interested in participating should consult with their physician to discuss the risks and benefits before discontinuing medication.

The OASIS-HAE Plus Study

The US HAEA is currently assisting IONIS in recruiting people with HAE for the OASIS-HAE Plus study.

The OASIS-HAE Plus study is an open-label extension study without placebo, evaluating the safety and effectiveness of an investigational subcutaneous preventive medicine called donidalorsen, which is given once every 4 or 8 weeks. This investigational drug uses a technology called antisense, which targets the kallikrein generating system using messenger RNA to suppress the protein that produces kallikrein.

To qualify for the OASIS-HAE Plus study, participants must be 12 years of age or older with a documented diagnosis of HAE. This study will help researchers learn if the study drug is safe and effective for people with HAE when given over a long-term period. Participants in the OASIS-HAE Plus study are either switching over from a different prophylaxis therapy, or continuing on from another donidalorsen study.

CSL312_3003 Pediatric Study

The US HAEA is currently assisting CSL Behring in recruiting children ages 2-11 with HAE for the CSL312_3003 study, which will investigate the safety and efficacy of subcutaneous CSL312 for prophylactic treatment of pediatric-age individuals with HAE.

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 an HAE advocate at 866-798-5598 to see if there will be an active clinical trial site in your area.

HAEA Events Calendar

Thursday, May 16th, at 7:00 PM ET / 4:00 PM PT

HAEA Treatment Education Series Webinar: C1-Inhibitor to Treat the Root Cause of HAE Swells

Guest Speakers: Jay Kashkin, MD
Rachel Sharp, RUCONEST Patient Advocate (RPA)
Sponsored by: Pharming
Link Webinar: https://haea.zoom.us/j/83452121380
Phone: +1 309 205 3325
Webinar ID: 834 5212 1380

Join us for an upcoming HAE IN-MOTION® event in Boston, MA!

We're thrilled to invite you to the upcoming HAE IN-MOTION® event! Join us for a day filled with connection, support, empowerment, and FUN!

Event Details:

Date: Saturday, June 15, 2024
Time: 10:00 AM - 2:00 PM ET
Location: Franklin Park Zoo (Pine Knoll) 1 Franklin Park Road, Boston, MA 02121

Thank you to our Sponsors!

Gold: BioCryst, CSL Behring, Pharming, and Takeda

Bronze: Accredo and Astria

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.