Important Reminder: Be Aware of your Charitable Financial Assistance Organization’s Annual Re-enrollment Deadline

If you are enrolled with a charitable assistance program such as The Assistance Fund (TAF) or Accessia Health, you are required to re-enroll each calendar year. It is important to know when your re-enrollment dates are coming up, and ensure you complete the necessary steps during the process to ensure continued assistance. Below is a list of helpful information and reminders about the re-enrollment process and requirements.

The Assistance Fund (TAF)
Re-enrollment for TAF assistance occurs in the last quarter of the year (November – December). People with HAE currently enrolled in the program must submit their re-enrollment applications between November 1 and November 17, and will be notified by December 31, 2023 if the application has been accepted.

All patients receive three re-enrollment communications from TAF:

1. October 2 by email,
2. mid-October by postal mail (a postcard), and
3. November 29 by email. These communications include personalized re-enrollment information and instructions.

If you are currently enrolled in charitable assistance with TAF, please watch for re-enrollment communications in early October. If you have any questions, you can reach out to TAF directly at (833) 343-2148 or by visiting their website at http://www.tafcares.org.

Accessia Health

HAEA friends already receiving active assistance with Accessia Health must go through an eligibility review every 24 months. Everyone receiving assistance from Accessia Health can see their eligibility review date by logging into the patient portal at www.accessiahealth.org and clicking on “patient portal” at the top. You can also reach Accessia Health directly at (800) 366-7741 with any questions.

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HAEA Medicare Research Survey - Your Participation is Needed!

Navigating Medicare can be a challenging and overwhelming process for people with rare diseases, whether you are re-enrolling or gathering information for the future.

We invite all people with HAE ages 60 and older to participate in a vitally important Medicare Research Survey by October 31, 2023. This study will help to:

• identify areas of focus and challenges experienced by those in the HAE community with Medicare,
• provide relevant information and resources that will help individuals better understand the differences in plan options, and
• tailor how the HAEA can better assist the community with Medicare-related questions and concerns.

Click HERE to take the survey!

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Over 500 HAEA friends stepped it up for HAE and raised awareness during the 2023 HAE IN-MOTION® event!

Thank You to All Who Participated in the 2023 HAE IN-MOTION® - Step it Up for HAE event!

This highly successful fundraising event connected our community with friends and neighbors in a joint effort to advocate for improved access to modern therapies and research to find a cure for HAE.

A heartfelt thank you to all HAEA friends who shared their stories, sent their photos, and raised funds for this special event.

Celebrate HAE Youth Advocacy Month!

The HAEA Youth community is unstoppable when we join forces to make our voices heard. Be part of the HAE Youth Advocacy month celebration by joining the HAEA Youth Grassroots Advocacy Network.
The Youth Advocacy Network is a branch of the HAEA’s Grassroots Advocacy Network that offers youth-focused training and advocacy opportunities for teens and young adults between the ages of 12 and 25.

Watch the following short video to learn more about the HAEA Youth Advocacy Network and how you can get involved. https://vimeo.com/872913008?share=copy

Make your voice heard during HAE Youth Advocacy Month and beyond! Click here to sign up today!

Are you looking for other ways to make an impact this month? Here’s few things that you can do right now!

1. Download our newly released Guide to a Successful Advocacy Journey here.
2. Interact with us on social media! Find us on instagram at @haeayouth and share one of our posts on your personal page.
3. Write a letter using VoterVoice on our website. https://www.haea.org/pages/p/voter_voice
4. Watch the 2023 HAEA Virtual Capitol Hill Day recording to learn about the issues currently facing our community here.

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There was once a time when Jasmeen, an HAEA Regional Youth Leader, was reluctant to become involved with the HAE community. Read about how she confronted her fears and became a leader in the HAEA and HAEi communities.

Access the HAEA Community Blog and read Finding my Confidence through Advocacy and Youth Leadership 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!

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HAE Speaks Podcast

HAE Speaks Podcast - Episode 41: Back to School Tips with Mandy

Amanda Grant, HAE Health Advocate, shares advice to help you be prepared for back to school. She also shares many resources available through the HAEA to help guide conversations with the school.

Listen Now!

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#BeyondHAE Youth Podcast

This month's BeyondHAE’s Digging Deeper Interview Series features HAEA Youth Leadership Council member Noah, who interviews Natalie, an award-winning filmmaker who has HAE. In this episode, Natalie talks about what it was like for her growing up with HAE, and how she pushed beyond her diagnosis to achieve her goal of becoming a filmmaker and starting a family. This is Natalie's story.

Listen to the Podcast here!

HAE Speaks and #BeyondHAE are available to download on Apple Podcasts, Spotify, or wherever you get your latest podcasts!

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

The HAEA CARE Groups are held virtually three times a month through Zoom. For the month of October our HAEA CARE Groups will come together to share ways to cope with the scary moments we experience because of HAE. Join us in November when we discuss how to prepare for the holidays while continuing to care for our physical and emotional well-being.

Upcoming HAEA CARE Groups:

• Thursday, October 12, 2023 - 11:00 AM ET / 8:00 AM PT
• Tuesday, October 17, 2023 - 10:00 PM ET / 7:00 PM PT
• Wednesday, November 1, 2023 - 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.

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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.

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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.

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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 either 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.

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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.

Thursday, October 12th at 7:00 PM ET / 4:00 PM PT

• HAEA Treatment Education Series Webinar: Preparing for Prior Authorization Reauthorization
• Speakers: Mary Wilber & Teri Templeton,
  Senior Manager, Patient Support at BioCryst
• Sponsored by: BioCryst
• Link Webinar: https://haea.zoom.us/j/89364048885
• Phone: +1 646 558 8656 (Webinar ID: 893 6404 8885)

 REGISTER HERE 

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Upcoming HAEA CARE GROUPS:

• Thursday, October 12, 2023 - 11:00 AM ET / 8:00 AM PT
• Tuesday, October 17, 2023 - 10:00 PM ET / 7:00 PM PT
• Wednesday, November 1, 2023 - 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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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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10560 Main Street, Suite PS40 Fairfax City, VA 22030		CONTACT AN HAE ADVOCATE: (877) 839-4232
DONATE		JOIN HAEA
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 © (2023) 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.