From Jess Myers, Communications and Advocacy Manager, US HAEA
Visits with Elected Officials During HAEA Virtual Capitol Hill Day
This year’s HAEA Virtual Capitol Hill Campaign once again showcased the incredible dedication and passion of our grassroots advocates – a group of volunteers who donate their time to be a part of the HAEA public policy advocacy program. These HAEA friends met virtually with their elected officials to share personal stories and advocate for policies that protect: Full access to HAE therapies, financial support for treatment, and funding for research to address the remaining scientific mysteries surrounding HAE.
Grassroots advocates from 33 states held over 60 meetings with Members of Congress and their staff, raising awareness about HAE and emphasizing the importance of continued support for our community. Each conversation helped strengthen relationships with key decision-makers and advance our mission to ensure that everyone affected by HAE receives the care they deserve.
Thank you to all the HAEA grassroots advocates who shared their voices and made a difference. Your commitment continues to drive meaningful legislative and regulatory policies that benefit people with HAE and their families.
Shining a Spotlight on the Next Generation of HAEA Leaders
Every October, we celebrate Youth Advocacy Month by showcasing the stories and activities of the youth advocates in our community. This year, we are excited to recognize over 35 young leaders who were nominated to the Youth Advocacy Achievement League, a program that honors young advocates who have stepped up in powerful ways that include:
- Raising awareness about HAE,
- Championing legislative change,
- Supporting their peers, and
- Strengthening their local communities.
We’ll be sharing Youth Advocacy Achievement League stories across social media in October. We invite you to follow along, celebrate their achievements, and join us in honoring the next generation of HAEA leaders who are paving the way toward a brighter future. Find us on Instagram at @HAEAYouth.
New Resource for Young Adults: Insurance Frequently Asked Questions
Navigating the American insurance system can be confusing, especially while managing HAE. That’s why youth leader, Isabelle B., worked with the US HAEA to create the Young Adult Insurance Frequently Asked Questions document – a helpful guide to answer common questions about coverage options and enrollment.
If you’re based in the United States and aging out of a parent’s plan, exploring the marketplace, or choosing between employer options, this resource can be used to support you every step of the way.
Check out the new Young Adult Insurance FAQ here: Young Adult Insurance FAQ
Bringing the HAEA Community Together Through Our Community Connection Events
The HAEA Community Connection Events provide people living with HAE, along with their loved ones and caregivers, the opportunity to meet in a supportive and understanding environment. Attendees share their personal stories, exchange helpful insights, and gain valuable information about the many programs and resources available through the HAEA.
Earlier this year, the HAEA hosted events engaging with more than 350 people with HAE and their families in cities all over the United States, including: Fairfax, VA, Orlando, FL, Detroit, MI, Birmingham, AL, Chicago, IL, and Northern California. This fall, the HAEA will continue these important gatherings with Community Connection events in Middlefield, Connecticut, and San Juan, Puerto Rico.