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.
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.
Sincerely,
[Your Name]
[Your Address]
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.
