HAEA in Action March 2019 Newsletter Driving HAE Research

HAEA presents original research at the national conference of American Academy of Allergy, Asthma & Immunology

On February 25, US HAEA President, Tony Castaldo, presented findings of new, HAEA driven, research: A Comprehensive Approach to Assessing the Value of Prophylactic Therapy for the Rare Disease Hereditary Angioedema Using Real-World Patient Data, at the American Academy of Allergy, Asthma & Immunology (AAAAI) in San Francisco, CA. Supporting this research, members of the US HAE Association completed an anonymous online survey designed to obtain a comprehensive profile of the HAE patient experience re: education, employment, attack frequency, treatments, comorbidities, caregiver economic costs, and actual billed costs for attack-related hospitalizations, physician office visits, or emergency room admissions. The survey results confirm and expand upon those from recent clinical trials. It shows that prophylaxis with the newest subcutaneous therapies leads to sizable reductions in HAE attack frequency and that it provides significant, clinically relevant improvements in Quality of Life.


 Click here to learn more about how the HAEA supports HAE research!


Pam King Scholarship Fall 2019 ART 3

Pam King HAEA Scholarship Program is NOW ACCEPTING APPLICATIONS for the Fall 2019 academic semester

The US HAEA is dedicated to helping our patient community achieve their lifelong goals and aspirations. The Pam King HAEA Scholarship Program provides financial support for HAE patients seeking to improve their lives through academic achievement. Since 2015, this program has helped dozens of HAE patients reduce the financial burden of their college tuition.

 Apply for a Scholarship here!

IMPORTANT: The HAEA Scholarship application is a multi-step process that requires applicants to work with their school to submit requested documents. Please submit your application before the deadline to allow enough time to complete the additional application requirements before the Saturday, March 30 deadline.

Brady Club Send your Story 3 2019

Get Ready for the Spring Brady Club Activity Book!

The HAEA Brady Club is getting ready to mail out the Spring Activity Book to registered Brady Club Members. Brady Bear’s Activity Books are filled with fun stories, jokes, activities, and even an article from Dr. C at the US HAEA Angioedema Center. Your child will be excited to see an envelope addressed directly to them arrive in the mail!

¡El Cuaderno de Actividades del Club de Brady estará disponible en ESPAÑOL esta primavera! Si desea recibir su Cuaderno de Actividades del Club de Brady en español, por favor comuníquese con la Defensora del Paciente de la HAEA, Lisa Facciolla a lisa@haea.org.

The Brady Club Activity Book will be available in Spanish this Spring! If you would like to receive your Brady Club activity book in Spanish, please contact, HAEA Patient Advocate, Lisa Facciolla at lisa@haea.org.


Join the Youth Leadership Council

Are you an HAE youngster between the ages of 12 and 25? Sign up for the HAEA Youth Leadership Council (YLC) and receive updates about our quarterly virtual chats, Youth Edition Webinars, and events in your area. YLC members connect with and support other youth in the HAE community. 

Register for the HAEA Youth Leadership Council here!

HAEA Health Tips

Tips from your HAEA Patient Health Advocates

The HAEA’s Health Advocates have some ideas to welcome the Spring season.

Lastly, if you have any insurance questions or access issues, contact the HAEA Health Team for answers and support!

Contact the HAEA Health Team here!

HAEA Advocacy Webinar

You can help Advance HAE research

The US HAEA Advance HAE Scientific Registry collects reports from HAE patients and family members that summarize their experiences living with HAE. This information is crucial to new HAE research.

What did our Quarter 3 Registry Reports tell us?
Advance HAE Scientific Registry members told us their greatest concerns for the future included:
  • losing insurance coverage for their therapy
  • having access to therapies
  • assistance programs going away
These valid concerns are already being addressed by the US HAEA! The HAEA continually works for the future of all HAE patients and family members – including advocating to protect access to therapy. Participation in the Advance HAE Scientific Registry provides data to support HAEA’s work on your behalf.

Join the Registry HERE!


HAEA Virtual 5K 1

Announcing the 2019 hae day :-) Virtual Walk/Run!

You can get some good exercise, spread HAE awareness, and fundraise for hae day :-) 2019! The HAEA has launched its 1st Virtual Walk/Run to commemorate hae day :-) between February 28th (Rare Disease Day) and May 16th (hae day), 2019! Registration is FREE, and we will be tracking the progress of all of our HAEA community participants to see how much distance was covered together to spread HAE awareness. Funds raised from the Virtual Walk/Run will support the HAEA’s three main programs: Pam King HAEA Scholarship Program, HAEA Compassion Fund, and HAE Research! All individuals that raise $50 or more will receive an official 2019 hae day :-) Virtual Walk/Run keepsake Finisher Medal! Register today here, set-up your team, and start logging in your distance on February 28th!


HAEA Swell Fotos

Send us your swell photos and help educate others

Do you have photos of yourself during an HAE attack? The HAEA is updating its image library and would like to include your photos that show what an attack looks like. These images are used to educate physicians and other medical professionals about how to recognize HAE symptoms. You can help others learn about what HAE looks like!

Please send your high-resolution photos to ianiceviel@haea.org. Then click the link below to complete the consent form, allowing us to use your photos for HAE education.

Action Alert HAEA 2019 1
Keep Hereditary Angioedema Included in the Defense Department Medical Research Program (PRMRP)
The Fiscal Year (FY) 2020 appropriations process has recently started and key US Senators will be making decisions by April about what diseases to include on the next Department of Defense (DoD) Research Program’s eligible conditions list. Hereditary Angioedema has been a part of this DoD Research Program for years. The Program provides millions of dollars in funding for scientific advancements. Although funded through DoD, it is not limited to research on military issues. It includes broad basic and clinical medical research in connection with other federal agencies, such as the National Institutes of Health (NIH). The time to act is now! Please take a moment to contact your Senator on the Defense Appropriations Subcommittee (see the list below by state) and ask them to support Hereditary Angioedema again on the PRMRP list for FY 2020.

Senate DoD Appropriations Subcommittee
Sen. Richard Shelby (R-AL), Chair
Sen. Richard Durbin (D-IL), Vice Chair
Sen. Mitch McConnell (R-KY)
Sen. Patrick Leahy (D-VT)
Sen. Lamar Alexander (R-TN)
Sen. Diane Feinstein (D-CA)
Sen. Susan Collins (R-ME)
Sen. Patty Murray (D-WA)
Sen. Lisa Murkowski (R-AK)
Sen. Jack Reed (D-RI)
Sen. Roy Blunt (R-MO)
Sen. Jon Tester (D-MT)
Sen. Jerry Moran (R-KS)
Sen. Tom Udall (D-NM)
Sen. John Hoeven (R-ND)
Sen. Brian Schatz (D-HI)
Sen. John Boozman (R-AR)
Sen. Tammy Baldwin (D-WI)
Sen. Lindsey Graham (R-SC)

Take Action
  • Please email HAEA Patient Advocate, John Williamson (john@haea.org), to say you are willing to send the email (below) to your Senator.
  • US HAEA will provide you with the email address for the staff person in that Congressional office.
  • Send your e-mail with a personalized note, briefly providing your personal HAE experiences and your interest in advancing HAE research.
  • Please copy (cc:) John Williamson (john@haea.org) on your email so that the US HAEA can follow up on your request with each Senate office.
  • Let us know if you have any questions.
Thank you for reaching out and making your voice heard on this important effort to support HAE research!

Dear [Staff Person Name],

I am writing to you today as a constituent and as an advocate for the Hereditary Angioedema patient community to ask you to continue to support the inclusion of Hereditary Angioedema (HAE) as a condition eligible for study through the Peer-Reviewed Medical Research Program (PRMRP), as you work to finalize the Fiscal Year (FY) 2020 Defense Appropriations Bill and corresponding Committee Report.

For many years, Congress has included Hereditary Angioedema as a condition eligible for study through the PRMRP. This opportunity has been incredibly meaningful for researchers and the broader effort to advance our scientific understanding of HAE and its impact on patients and their families. Hereditary Angioedema is currently being studied in connection with post-traumatic stress disorder (PTSD). Retaining Hereditary Angioedema on the list of diseases included in the PRMRP for FY 2020 will capitalize on recent progress and emerging research opportunities for this ultra-rare, debilitating, and life-threatening condition.

[Briefly tell your HAE story]

On behalf of HAE patients and families, both local and across the country, thank you for showing strong leadership on medical research issues. Again, for FY 2020, please work with your Senate colleagues to ensure “Hereditary Angioedema” is once again included as a condition eligible for study through the DoD PRMRP.


[Your Name]

[Your Address] 

Upcoming Events

HAEA Meet & Greet!

The HAEA can plan a Meet and Greet event in your local area! Meet and Greets are designed to offer an overview of the great programs available through the HAEA, as well as give you an opportunity to connect with other patients in your area.

Through this program, you and your family member or caregiver can: Learn about HAEA programs and services available to you, hear from HAEA staff, ask questions, and meet others in the HAE community.

Check out the next Meet and Greets listed below! See you there!

For more information, please contact, HAEA Patient Advocate, Mike Mallory at mikemallory@haea.org or (513) 858-9370. 

HAEA Meet & Greet New Jersey

HAEA Meet & Greet Philadelphia

HAEA Meet & Greet New York

HAEA Meet & Greet Cincinnati

Team Jack Parade

Reserve here!

Cincinnati Reds Parade

Reserve here!

Grab a Tee for HAE Golf

Reserve here!

The HAEA is a patient advocacy and research organization committed to actively engaging our community in a wide variety of grass roots activities that promote disease education and awareness. We provide personalized services to address the unique needs of HAE patients and their families, which include 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 patient quality of life through improving diagnosis and knowledge of the disease, and encouraging a tailored, patient-focused use of available therapeutic options. The HAEA is product neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies.

The US Hereditary Angioedema Association
10560 Main Street , Suite PS40
Fairfax City, VA 22030


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