US Hereditary Angioedema Association


IN THIS ISSUE
Participate in a Ground-Breaking Research Study focusing on Caregivers for people with HAE Help Your Child Meet HAE Friends Through the Brady Club Pen Pal Program Listen to the HAE Speaks Podcast: US HAEA National Summit Ask the Experts Q&A Read the HAEA Community Blog: “The Power of Prevention to Address the Burden of HAE”	Educating Medical Professionals on HAE Through the CME Program Explore Nature as a Form of Self-Care During the HAEA CARES Groups Read our Clinical Trial Updates and Choose to be Part of Winning Approval for the Next Generation of HAE Therapies HAEA Events Calendar Social Media Snapshots

Participate in a Ground-Breaking Study focusing on Caregivers for people with HAE

HAE research studies focus on how the condition affects individuals. However, nobody has ever examined the critical role (challenges and contributions) of HAE Caregivers. We cordially invite anyone who fulfills the role of Caregiver to someone with HAE to participate in a truly ground-breaking HAEA-initiated study.

Caregivers are an important, yet often overlooked group in the HAE community. This study will tell the Caregiver story by measuring the impact of HAE on their daily lives. The success of this HAEA research effort depends on a high rate of participation from HAE Caregivers.

The time commitment for this survey is approximately 25-30 minutes. We recognize that time is valuable, so we will send participants a check for $40 when they complete the survey.

Remember, your personal information is kept confidential and can never be connected to the answers you provide.

We appreciate and thank the contributions of those who have already completed this vital survey. If you have any questions or would like additional information on the study, please reach out to LucyAnn Ramos at (571) 992-2562 or via email at lucyann@haea.org.

Thank you for your commitment to advancing research and improving the lives of individuals with HAE and their caregivers!

Help Your Child Meet HAE Friends Through the Brady Club Pen Pal Program

What is the Brady Club Pen Pal Program?
We are thrilled to introduce the Brady Club Pen Pal Program: A new initiative to create a network where anyone in the HAE community between the ages of 7 and 12 (including siblings) can connect, build friendships, and uplift one another.

How Does It Work?
Sign Up: Parents or guardians can visit our website HERE and fill out a simple form to enroll their child in the program.

Pen Pal Matching: Once enrolled, each child will be carefully matched with a Pen Pal from a different location, creating a diverse and exciting network of friends.

Let's Build a World of Joyful Connections!
We believe in the power of community, and the Brady Club Pen Pals Program creates a space where friendships flourish, smiles abound, and hearts are connected across the miles.

What are parents saying about the program?
“My daughter is loving the pen pal program. She and her pen pal have exchanged a couple of letters and even got to FaceTime last week! Thank you so much for organizing this. We love it!” -Brady Club Parent

We look forward to having your family join this wonderful program. Together, we can make a difference in the lives of kids affected by HAE.

Sign your child up for the Brady Club Pen Pal Program today!

Podcasts

HAE Speaks Podcast

Tune in to our latest podcast episode as we bring you highlights from the Ask the Experts Q&A session at the 2023 US HAEA National Summit in Orlando, Florida! In this episode, members of the US HAEA Medical Advisory Board address pressing questions and provide invaluable insights into the challenges and advancements in the field of Hereditary Angioedema (HAE). Listen in on this informative and enlightening discussion!

Listen to the episode now by clicking HERE!

Allergy and immunology specialist, Dr. Cristine Radojicic, shares the importance of long-term prophylaxis to minimize the burden of Hereditary Angioedema (HAE). Learn about treatment goals and how you can actively participate in making treatment decisions with your doctor through shared decision-making.

Read The Power of Prevention to Address the Burden of HAE 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!

HAEA CARE Groups (Community, Acceptance, Respect, Empathy)

Seeking Self-Care in Nature

“I go to nature to be soothed and healed, and to have my senses put in order.”
- John Burroughs, American naturalist and nature essayist

Summer is here and with it opportunities to soak up some fun in the sun! Outdoor activities like gardening, hiking, or camping can benefit our physical and emotional well-being. It’s important, however, that we stay safe by being mindful of basic self-care practices while we spend time outside.

Here are some things to keep in mind when you’re outdoors:

Don’t forget the basics like applying sunscreen and staying hydrated. Protecting yourself from sunburns and dehydration is important for avoiding discomfort or pain.
Make sure your outdoor plans are realistic. Engaging in moderate to strenuous activities can be a great goal, but give yourself plenty of time to prepare for your chosen level of exercise.
Do you want to try some outdoor activities but are unsure of where to start? Check your community resources - like your local library or city parks and recreation departments - to see if there are any group activities you may want to try.

The HAEA CARE Groups are virtual group meetings that offer opportunities for our community to share ideas and support one another.

Upcoming HAEA CARE Groups

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

September topic: Self-care September.
Dates:

Wednesday, September 4, 2024 - 7:30 PM ET / 4:30 PM PT
Thursday, September 12, 2024 - 11:00 AM ET / 8:00 AM PT
Tuesday, September 17, 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

HAEA Treatment Education Series Webinar

BioCryst Event

Thursday, June 27th at 7:00 PM ET / 4:00 PM PT

HAEA Treatment Education Series Webinar: Now is the Time to Discover a Preventative Therapy That is Effective AND Convenient

Guest Speakers: Patricia Stewart, MD
Sponsored by: BioCryst
Link Webinar: https://haea.zoom.us/j/86721342083
Phone: +1 (305) 224-1968
Webinar ID: 867 2134 2083

HAEA Treatment Education Webinar Brief

We also invite you to watch the on-demand HAEA Treatment Education Webinar Brief: Individualized Treatment—Working With Your Healthcare Team on the Approach and Plan That's Right For You, featuring Diane Ramsey-Paige, Senior Nurse Advocate Manager, Global Patient Advocacy at BioCryst Pharmaceuticals.

WATCH the webinar brief HERE!

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

Social Media Snapshots

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

Update your HAEA membership information HERE!


10560 Main Street, Suite PS40 Fairfax City, VA 22030		CONTACT AN HAE ADVOCATE: (866) 798-5598
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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.