US Hereditary Angioedema Association


IN THIS ISSUE
Protecting Financial Assistance 2023 US HAEA National Summit Open Enrollment Season Families4HAE New Year, New Coping Skills HAEA Community Blog: Ava	HAE Speaks Podcast #BeyondHAE Youth Podcast Clinical Trial Updates HAEA Events Calendar Social Media Snapshots

Dear HAEA Friends,

Recently, the HAEA became aware of changes in the amount of the 2023 assistance that will be offered by an organization that provides financial support (premium assistance, copay assistance, medical expenses, and travel) for the HAEA community.

As your advocates, fellow patients, and caregivers, the HAEA is moving forward with a sense of urgency to carefully assess the potential impact on people with HAE, and design a fierce advocacy strategy to address the situation.

To be a part of the solution to this emerging issue, and enable an effective and focused advocacy approach, the HAEA needs information from our community members who will be affected by changes in their charitable assistance.

If you received notification that your charitable assistance will be reduced, please contact research@haea.org, and request a link to a brief questionnaire.

As with all information collected by the HAEA, your responses and personal information will be kept strictly confidential.

If you need immediate assistance, please contact the Health & Research team at (877) 839-4232.

REGISTRATION FOR THE 2023 US HAEA NATIONAL SUMMIT OPENS ON JANUARY 16th!

As announced, the 2023 US HAEA National Summit will be held in Orlando, Florida, from July 20 - 23, 2023.

The Summit theme for 2023— ‘Living Beyond Boundaries’—will frame a program that provides a sense of the past, a realistic assessment of the present, and a positive look to the future. This HAEA gathering will offer an innovative format and unique programs that further unite our HAE community and guarantee a memorable and empowering experience for all.

The Summit registration page will include conference details, information on conference grants, youth and young adults’ special tracks, hotel accommodation and ground transportation, Orlando attractions, and much more.

Conference grants are available to cover travel and/or hotel expenses. A limited number of grants will be awarded through a lottery process that will open on Monday, January 16th and close on February 28th.

NOTE: To receive a grant, you must agree to attend all SUMMIT sessions. Ushers at the SUMMIT will scan badges before each session to record attendance.

Registration will open on January 16, 2023 on www.haea.org!

Watch the 2023 Summit Video Here!

Don’t Miss Your Chance to Evaluate Your 2023 Insurance Plan!

We encourage you to take some time to review your options and compare them to determine which one is most attractive to you. The HAEA Health Team is available to help you navigate the selection process and find the best option available to you.

Medicare Advantage Open Enrollment Period: January 1st – March 31st each year, if you’re enrolled in a Medicare Advantage Plan, you can switch to a different Medicare Advantage Plan or switch to Original Medicare (and join a separate Medicare drug plan) once during this time. Note: You can only switch plans once during this period.

ACA (Affordable Care Act): Open Enrollment runs from Monday, November 1st through Sunday, January 15th with coverage beginning on January 1, 2023.

If you don’t enroll in a plan by January 15th, you will be unable to get 2023 coverage unless you qualify for a Special Enrollment Period.

Employer sponsored plans: Each employer sets their enrollment dates so it is important to review and research the plans offered with your Human Resources department to ensure the plan you choose offers the best coverage for you.

Please reach out to your HAEA Health Team for assistance in your insurance review, research, and selection process.

The HAEA Health Team is always here for you! Please reach out to us at 866-798-5598 for assistance with: 1) insurance issues, 2) finding an HAE expert physician, 3) updating your member information, 4) joining a virtual support group, or 5) HAE-related questions.

A sincere thank you to all who generously donated to help reach the HAEA’s #Families4HAE fundraiser goal.

HAEA Youth Programs allow us to shape the next generation of HAE advocates. Thank you for your continued support!

New Year, New Opportunities, and Strategies

Make 2023 the year you don’t allow anxiety to interfere with your happiness, health, and well-being. Our virtual support groups–HAE Heroes Connecting– will help you explore ways to harness positive energy, deal with daily challenges, and live your best life.

The HAE Heroes Connecting virtual support groups are held three times a month on Zoom. These group meetings provide opportunities for HAE friends to share their experiences and offer support to fellow community members. If you’re interested in joining one of these regular support groups, contact the HAE Health Team for more information. You can call (877) 839-4232 or email an advocate at troyce@haea.org and adinaramsey@haea.org.

A new year means new HAEA Community blog articles! This month’s article focuses on HAE caregiver, Ava, and how she was able to raise HAE awareness by doing something she loves…running!

“Running was something that I always loved to do, so I was very grateful to be able to use something that I loved to work towards making a difference.”

Access the HAEA Community Blog today and read The Caregiver Journey: How I Ran for a Change by clicking HERE!

Would you like to share a unique story or opinion about your HAE? The HAEA Community Blog is the perfect venue to share your story in your own words with other members of the HAE community. You can share your story HERE!

Podcasts

HAE Speaks Podcast

HAE Speaks Podcast - Episode 32: In this episode, Kelsie talks about her HAE journey and navigating college with HAE.

Listen Now!

Do you have a topic, question, or idea that you would like us to cover? Send your suggestion to Mike Mallory at mikemallory@haea.org.

#BeyondHAE Youth Podcast - Digging Deeper Interview Series with Avery

Youth Podcast series

We kick off the year with a new series of the #BeyondHAE podcast called "Digging Deeper". Each episode in the series will feature an interview from either someone diagnosed with HAE or someone whose loved one is diagnosed as we dig deeper into their experiences with HAE. This episode is hosted by HAEA Youth Leadership Council member Sophia, who interviews 10 year old Avery. Avery is a caregiver to her older brother Jack, who has HAE. Avery talks about what it's been like for her to support her brother on his HAE journey, and highlights how she has gotten involved to help raise HAE awareness in her own way. This episode is now available to watch in video format on Spotify.

Listen to the Podcast here!

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

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 OASIS Study

The US HAEA is currently assisting IONIS in recruiting people with HAE for the OASIS-HAE study, a Phase 3 worldwide placebo-controlled trial, which aims to determine whether its study drug (called donidalorsen) is safe and effective at reducing or preventing HAE attacks.

Participants may be eligible to participate in an open-label extension study at the end of the OASIS-HAE study, where all participants receive donidalorsen.

To qualify for the OASIS-HAE study, participants must be 12 years of age or older with a documented diagnosis of HAE. Participants must experience at least two attacks during the screening period, and have access to, and the ability to, use at least one or more acute medications to treat HAE attacks.

KONFIDENT Study

The US HAEA is currently assisting Kalvista in recruiting people with HAE for the KONFIDENT study, a Phase 3 worldwide placebo-controlled trial where doctors are studying two different doses of KVD 900-301 to assess which one may work best as a safe on-demand treatment for HAE attacks.

To qualify for the KONFIDENT study, participants must be 12 years of age or older; diagnosed with HAE type I or II; have access to an on-demand medication to use for HAE attacks; and be willing to use a study-approved method of birth control during the study.

HAERMONY 1 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.

HAEA Events Calendar

Thursday, January 26, 2023 - 7:00 PM ET

HAEA Treatment Education Series Webinar: Re-treating? Let's talk about it. (VIRTUAL)

Speaker: Michael E. Manning, MD
Sponsored by: Pharming
Link Webinar: https://haea.zoom.us/j/82750038451
Phone: +1 646 558 8656 (Webinar ID: 827 5003 8451)

Upcoming HAE Heroes Connecting Support Groups:

Thursday, January 12th, 2023 - 11:00 AM ET
Wednesday, February 1st, 2023 - 7:30 PM ET
Thursday, February 9th, 2023 - 11:00 AM ET
Tuesday, February 20th, 2023 - 10:00 PM ET

If you are interested in joining a virtual support group, please contact Troyce Venturella at troyce@haea.org or Adina Ramsey at adinaramsey@haea.org

Tuesday, February 14th, 2023 - 6:30 PM ET

HAEA Round Table: Relationships and HAE (VIRTUAL)

Watch on the US HAEA official Facebook page HERE!

Social Media Snapshots

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

support Families4HAE

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 © (2022) 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.