US HAEA – Wide-Ranging Support and Research Investment for those in community with HAE-Normal C1 INH
The HAEA’s fundamental goal is to improve HAE patient quality of life. To that end, we continue to make substantial investments in groundbreaking research aimed at understanding the genetic and biochemical causes of swelling experienced by a very important segment of our community that is diagnosed with HAE Normal C1INH. In addition, our health advocates are committed to providing personalized support to anyone with HAE-Normal C1INH that needs our help.
Researchers at the US HAEA Angioedema Center at the University of California at San Diego recently announced an HAEA funded and potentially ground-breaking assay (blood test) that determines the cause of swelling in cases where the diagnosis is not clear. This test will be of particular help for HAE patients with Normal C1 INH. The HAEA is now funding “validation research” (led by the Center) to expedite availability of this important blood test.
The US HAEA Advance HAE Scientific Registry collects and stores biological samples as well as clinical data from HAE patients and family members. We encourage Scientists to use the Registry’s data to better understand the natural history and pathobiology of HAE with Normal C1INH with an eye towards developing specific therapeutic targets.
The HAEA has also been busy conducting innovative health economics research designed to demonstrate the value of HAE medicines in terms of dramatic increases the patient quality of life and avoidance of costly ER visits, hospital stays, missed days of work, and lost social and educational opportunities. This research was recently featured at a national allergy/immunology physician conference and will be published in a medical journal.
Below is a list of scientific publications based on HAEA-funded research.
Threshold-stimulated kallikrein activity distinguishes bradykinin- from histamine-mediated angioedema. Lara-Marquez ML, Christiansen SC, Riedl MA, Herschbach J, Zuraw BL. Clin Exp Allergy
Hereditary angioedema with normal C1 inhibitor function: consensus of an international expert panel. Zuraw BL, Bork K, Binkley KE, Banerji A, Christiansen SC, Castaldo A, Kaplan A, Riedl M, Kirkpatrick C, Magerl M, Drouet C, Cicardi M. Allergy Asthma Proc.
HAE Pathophysiology and Underlying Mechanisms. Zuraw BL, Christiansen SC. Clin Rev Allergy Immunol.
US Hereditary Angioedema Association Medical Advisory Board 2013 recommendations for the management of hereditary angioedema due to C1 inhibitor deficiency. Zuraw BL, Banerji A, Bernstein JA, Busse PJ, Christiansen SC, Davis-Lorton M, Frank MM, Li HH, Lumry WR, Riedl M. J Allergy Clin Immunol Pract.
A Comprehensive Approach to Assessing the Value of Prophylactic Therapy for the Rare Disease Hereditary Angioedema Using Real World Patient Data. A. J. Castaldo, C. Jervelund, A. R. Kirk, D. Corcoran, H. B. Boysen, J. F. Long, S. C. Christiansen, B. L. Zuraw. 2019. Abstract and Poster Accepted for Presentation at Annual Meeting of American Academy of Asthma, Allergy, and Immunology. Manuscript in Preparation.
Before and After, the Impact of Available On-demand Treatment for HAE. Christiansen SC, Bygum A, Banerji A, Busse P, Li H, Lumry W, Davis-Lorton M, Bernstein JA, Frank MM, Castaldo A, Long JF, Riedl M, Zuraw BL. Allergy Asthma Proc.
Current State of Hereditary Angioedema Management: A Patient Survey. Banerji A, Busse P, Christiansen SC, Li H, Lumry W, Davis-Lorton M, Bernstein JA, Frank M, Castaldo A, Long JF, Zuraw BL, Riedl M. Allergy Asthma Proc.
Seven in Ten!
Seven safe and effective treatments for treatment and prevention of Hereditary Angioedema attacks have been approved and are available for treatment in the United States and other countries around the world. This occurred in only ten years! I think all of us who have or care for individuals with HAE are thankful for these life-changing and life-saving treatments.
Who do we thank? First and foremost thank you to those of you in the HAE community who volunteered your time and energy and bodies to participate in the clinical research trials that proved these treatments were effective and safe allowing them to be approved. Without your efforts this amazing accomplishment, (7 IN 10), would not have happened. You are the heroes in our community! We also should thank the HAEA for advocating for us, encouraging pharmaceutical companies to take the risk to develop these products, the pharmaceutical companies who did the drug development and the physicians and researchers who coordinated and managed the trials.
As a physician who conducts clinical research for HAE patients, I encourage you to become a hero. There is more work to be done to develop new and innovative treatments for HAE. You can help. Please know these trials do require you to make some sacrifices for the greater good. You will need to make time to keep your appointments, take your study medication, keep track of your progress and occasionally have some blood drawn. It is important for you to carefully and truthfully report your experience with the study medication. Some of the trials last months or years but it is vitally important that you stay in the trial until the end of it so a complete picture of your experience can be captured.
THANK YOU to all of you who made 7 IN 10 possible! And THANK YOU to those who will continue to support these important research efforts.
William R. Lumry, M.D.
Member, Medical Advisory Board HAEA
The 2019 HAEA National Patient Summit hosts a Special Professional Track for Your Physician
The 2019 National Patient Summit- Imagine the Possibilities has something for everyone, including your physician. This year, the HAEA will host a special Professional-Scientific Track that focuses on significant HAE-related issues. The CME accredited educational program is designed specifically for physicians, scientists, and medical professionals interested in Hereditary Angioedema (HAE). Invite your own HAE doctor to join us in Atlanta on Friday, July 26th! A limited number of travel grants are available for this specialty track, so let your physician know about this incredible educational opportunity today! For more information, or to register, your HAE physician can contact HAEA Patient Advocate, Anna Chenoweth, at email@example.com!
Pam King HAEA Scholarship Program
The Fall 2019 Pam King HAEA Scholarship Program application period is now closed. Thank you to all of our HAE college students who applied for this wonderful opportunity. Award announcements will be sent out by email on May 1.
HAEA Brady Club Activity Book
The Spring 2019 Brady Club Activity Book's will be mailed out in early April and we hope all of Brady’s young HAE friends will enjoy the newly added sections that feature some stories and jokes submitted by our Club members. If you have a child under the age of 12, the Brady Club is a MUST! Members get access to our fun and educational online platform and mobile APP, Activity Books delivered to your door, and invitations to participate in special HAE youth activities and virtual events.
2019 HAEA National Patient Summit Youth Programs
Thank you to everyone who registered for the Global Youth Advocacy Workshop and HAEA Patient Summit Youth Program at the 2019 HAEA National Patient Summit. This year, we have a record number of youth registered for the Summit and we look forward to creating an opportunity for these young people to learn about HAE, feel empowered as patients, caregivers, and family members, and build lasting friendships with their peers in the HAE community.
Spring is here and it is a perfect time to go through your health checklist
- Check in with your doctor if you haven't had an office visit this year.
- Keep your medical information updated for any upcoming prior authorizations you may need.
- Check in with your specialty pharmacy to get your next renewal date and prior authorization deadline - don't wait! Be proactive in your therapy renewal process.
- Spend time taking a walk in the park, reading a good book, planting spring flowers, or connecting with others.
- Most importantly, remember to take care of yourself and make time for YOU!
The HAEA health team is here for you. If you need assistance with physician referrals, insurance reimbursements, or if you have general HAE questions, please reach out to any of our HAEA Health Advocates.
hae day :-) 2019 Virtual walk/run
It is not too late to register! Sign up and start logging your steps. 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 :-) with everyone’s steps counted 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 registered participants 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 starting now! Ask your friends and family to join you!
The HAEA Headliners is a new section of the HAEA Newsletter dedicated to special events hosted by our HAEA members and HAEA Heroes. If you’ve hosted an HAE awareness or fundraising event recently, please send us a brief description and a photo and we will include it in the next newsletter.
Dine to Donate for HAE - Hamilton, Ohio
On Thursday, February 28th (Rare Disease Day), local families dined out to support the HAEA. Texas Roadhouse in Hamilton, Ohio donated a percentage of proceeds for every dinner to support the HAEA! Thank you, Texas Roadhouse!
St. Patrick’s Day Parade- Union, New Jersey
On Saturday, March 16th, the HAEA was represented in the Union, NJ St Patrick’s Day parade by local HAEA members. Patients and caregivers came out to show support and raise HAE awareness. A huge thank you to Team Jack for organizing this event and creating a magnificent HAE awareness float.
Cincinnati Red's Opening Day Parade- Cincinnati, Ohio
For the seventh consecutive year, the HAEA float will be featured in the Cincinnati Red's Opening Day Parade. Watch for the float and HAEA members on television or join us if you are a local!
Grab a Tee for HAE- Scottsdale, Arizona
Join patients and family members for a fun afternoon at TopGolf to raise HAE awareness and join together for a good cause.
*If you are interested in creating an HAE fundraiser or awareness event in your area or you would like to discuss your own great event idea, please contact Mike Mallory at, firstname.lastname@example.org, or 513-858-9370.
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 email@example.com or (513) 858-9370.
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.