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Dear HAEA Friends,
The Assistance Fund (TAF), which provides financial support (premium & copay assistance, medical expenses, and travel) has sent letters to some HAEA friends stating that they have reviewed the level of donations available and cannot renew funding at this time.
The HAEA has vigorously engaged in direct and urgent communication with TAF to understand why sufficient funding is not available, but no one is able to provide us with answers.
As your advocates, fellow patients, and caregivers, we are gravely concerned when an HAEA friend loses access to their medicine. If you receive a letter from TAF stating you will not be re-enrolled in 2024, it is critical that you immediately reapply to the waitlist to ensure that you are on the list when funding does become available.
Anyone that has not been renewed by TAF for 2024 should call the pharmaceutical company hub that provides services for the medication you have been prescribed:
- BioCryst - Empower (866) 536-7693
- CSL Behring - Haegarda Connect (844) 423-4273
- Pharming - Ruconest Solutions (855) 613-4423
- Takeda - One Path (866) 888-0660
Ask the Company if they will help when people with HAE lose financial assistance and access to their prescribed therapy due to circumstances beyond anyone’s control.
The HAEA will keep in touch as we continue working on your behalf to resolve this truly awful situation. Please do not hesitate to contact our Health Team at (866) 798-5598 should you have any questions or need immediate assistance.
Warm regards,
Tony Castaldo
Chief Executive Offer
Act Now, So Elected Officials Understand the Need for Continued Access of HAE Medications
Join us on Thursday, March 7th, at 1:00 PM ET / 10:00 AM PT for the Welcome to Congress Webinar! Learn about this year’s congressional agenda and how it could advance the HAE community’s legislative priorities.
This webinar will cover:
- Congress's legislative priorities,
- Issues that will impact the HAE community in 2024, and
- What you can do to participate in the HAEA volunteer grassroots advocacy program.
You don’t want to miss this highly informative webinar! Register today to secure your spot!
HAEi Americas Regional Conference
On March 15-17, HAE patients, caregivers, board members, and leadership of the HAEi Member Organizations from North, Central, and South America will join together in Panama City, Panama for the HAEi Americas Regional Conference.
We look forward to seeing many US HAEA members at the 2024 HAEi Regional Conference in Panama City!
If you have questions regarding the program, hotel, visa, travel grants or your registration, please contact the Conference host conference@haei.org. Keep an eye out on our social media for photos and updates from this event.
Take Advantage of the 2024 Scholarship Opportunities for People with HAE
Apply for the Fall 2024 Pam King HAEA Scholarship!
Are you planning to attend a college or university in the Fall of 2024? The HAEA helps students with a confirmed HAE diagnosis pursue their academic goals by reducing the financial burden associated with higher education.
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!
New HAEA Scholarship for Aspiring Healthcare Professionals now open for Fall 2024!
We are thrilled to announce an upcoming scholarship program for the Fall 2024 semester! The new scholarship will provide financial support for those pursuing a career in any healthcare-related field.
Key Information:
- Application Period: Applications for the fall semester are being accepted February 1 - March 31, 2024.
- Eligibility: Applicants must
- Have an HAE diagnosis
- Be between the ages of 17-30 and a member of the US HAEA
- Enroll in a medical or healthcare-related curriculum
Apply HERE for the Fall 2024 Aspiring Healthcare Professionals Scholarship!
For more information about the Pam King HAEA Scholarship Program or the HAE Scholarship for Aspiring Healthcare Professionals, please contact scholarship@haea.org
Coming Soon: CMF Music Therapy Scholarship Opportunity
The US HAEA invites individuals between the ages of 5 and 25 who have a confirmed HAE diagnosis, to apply for a scholarship for virtual music therapy sessions hosted by the renowned Children’s Music Fund.
The program is run by Children's Music Fund, a nonprofit organization founded by HAE treating physician, Raffi Tachdjian, MD, MPH. Dr. Rafffi’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.
Eligibility: HAEA members between the ages of 5 and 25 with a confirmed HAE diagnosis.
Application Opens: March 1, 2024
Submission Deadline: March 30, 2024
Stay tuned for more details on how to apply. For more information please reach out to Lisa Facciolla at lisa@haea.org
Connect with Others in the HAE Community at an Upcoming Meet and Greet
Stay connected with the HAEA community from the warmth and comfort of your home. This virtual event will provide an opportunity to meet and chat with others living with HAE and learn more about HAEA resources. We look forward to seeing you at the HAEA Virtual Meet & Greet.
- Date: February 8th, 2024
- Time: 6:30 pm ET/3:30 PM PT
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Podcasts
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HAE Speaks Podcast - Episode 45: HAEA DIY Community Events - Red Lake Nation HAE Awareness Walk
In this episode, we chat with Alicia, who shares her experiences hosting a memorial HAE walk in memory of her brother, Joseph Fairbanks Jr, who passed away due to HAE. Over 100 participants attended Alicica’s event in her hometown of Red Lake Nation, Minnesota!
Are you interested in fun ways to support the HAE community? Have you thought about hosting your own event? DIY “Do It Yourself” events are fun and they make a big impact in helping the HAE community.
Do you have a topic, question, or idea that you would like us to cover? Send your suggestion to Hannah Carroll at hannah@haea.org.
HAE Speaks and #BeyondHAE are available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!
HAEA CARE Groups (Community, Acceptance, Respect, Empathy)
Tell your rare story to raise awareness on February 29th when we celebrate Rare Disease Day! In this month’s HAEA CARE Groups, we will discuss ways to share our unique experiences on Rare Disease Day.
The HAEA CARE Groups are held virtually three times a month through Zoom. Join us in March when we will explore ways to express appreciation for our doctors in honor of National Doctor Day.
Upcoming HAEA CARE Group meeting times:
- Thursday, February 8, 2024 - 11:00 AM ET / 8:00 AM PT
- Tuesday, February 20, 2024 - 10:00 PM ET / 7:00 PM PT
- Wednesday, March 7, 2024 - 7:30 PM ET / 4:30 PM PT
These virtual group meetings offer opportunities for our community to share experiences and support others. 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.
Heart Health is important all year - Heart health is vital for our wellbeing and a key component of our HAE care plan. Diet and exercise promote heart and mental health. Even small changes in your routine can have great benefits. We have some great discussions during our monthly HAEA CARE Group times to support each other. We hope you can join us. Please reach out to the health team at 866-798-5598 or health@haea.org. We are on this journey together.
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Clinical Trials |
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 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.
HAERMONY1 Study
The US HAEA is currently assisting BioMarin in recruiting people with HAE for the HAERMONY1 study, an investigational gene therapy called BMN 331 to improve HAE symptoms in adults 18 years of age and older diagnosed with HAE due to C1-INH deficiency.
To qualify for the HAERMONY1 study, participants must be 18 years of age or older; diagnosed with HAE due to C1-INH deficiency; have 6 months of a continuous prophylaxis or on-demand treatment regimen (prior to study enrollment); and a documented attack frequency of at least 1 attack per month on average.
*Additional study requirements apply.
For those who qualify, participation lasts about 5 years after receiving the study drug. There are weekly and monthly visits during the first year. After the first year, the visits occur every three or every six months.
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.
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HAEA Events Calendar |
HAEA Virtual Meet and Greet:
Date: February 8th, 2024
Time: 6:30 PM ET/ 3:30 PM PT
Virtual Event
Guest Speaker: Pamela Johnson, Individual with HAE
For more information, please contact Lisa Facciolla at lisa@haea.org.
Upcoming HAEA CARE Groups:
- Thursday, February 8, 2024 - 11:00 AM ET / 8:00 AM PT
- Tuesday, February 20, 2024 - 10:00 PM ET / 7:00 PM PT
- Wednesday, March 7, 2024 - 7:30 PM ET / 4:30 PM 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.
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CONTACT AN HAE ADVOCATE:
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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.
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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
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