HAEA in Action June 2019 Newsletter
HAE C1 Normal ART 1

Celebrating hae day :-)

This year's hae day :-) generated a lot of excitement with a large number of HAEA members participating in and/or hosting events, educating others, and raising HAE awareness in their communities! We are very excited that hundreds of the NEW HAE ER Tool Kits have already been ordered, and are being distributed to emergency facilities across the country. Efforts to share this Tool Kit not only help raise HAE awareness in countless local communities, but also may help identify people who have swelling symptoms, and have not yet received a proper diagnosis.

HAE patients and family members registered 6,285,500 steps during the US HAEA’s first Virtual Walk/Run and as part of our hae day :-) celebration. Our energetic teams logged their steps from Feb 28th, Rare Disease Day, until May 16th hae day :-) and received a cool participant medal.

Besides the Tool Kit distribution and Virtual Walk/Run, HAEA members hosted their own hae day :-) events to help educate members of their community. Through these unique events, important HAE information was presented to hundreds of people and awareness was broadly spread among the general public.

Finally, over $3,000 was raised for the HAEA’s three key patient programs through the HAEA’s Facebook Campaign. Funds raised go to: 1) the Pam King HAEA Scholarship Program, 2) HAEA Compassion Fund, and 3) HAE Research. Thank you to everyone who participated, supported, and continue to educate others on hae day :-) and beyond to benefit all HAE patients.


Order yours today!



Don't Miss the Summit Registration Deadline

Don't miss the deadline to register for the 2019 US HAEA National Patient Summit - Imagine the Possibilities. If you wish to attend this 20th-anniversary event, you must register online by July 3rd, 2019.

Also, remember to invite your HAE physician or nurse to the 2019 HAEA National Patient Summit – Imagine the Possibilities TODAY! The HAEA will host a special Professional-Scientific Program that focuses on significant HAE-related issues. This CME accredited educational program is designed specifically for physicians, scientists, and medical professionals interested in Hereditary Angioedema (HAE). Invite your HAE doctor to join us in Atlanta on Friday, July 26th! Space is running out!

Your HAE physician can contact us for more information at summit2019@haea.org. #IMAGINEthePossibilities #HAEA20years #HAEASummit2019

Register HERE!



Budapest HAEA
Exploring Global HAE Research

US HAEA President and Chief Executive Officer, Tony Castaldo, Director of Research Janet Long, and HAEi Executive Vice President and Chief Operating Officer, Henrik Balle Boysen, participated in the 11th C1-Inhibitor Deficiency & Angioedema Workshop, along with the expert scientists from the US HAEA Angioedema Center at UCSD, Drs. Bruce Zuraw, Sandra Christiansen, and Marc Riedl. This series of conferences is organized every other year and is devoted to the presentation and discussion of the latest scientific findings related to bradykinin-mediated angioedemas.

HAEA Summer Tips

HAEA Health Summer Travel Trips

Summer is officially here and the HAEA Health Team has some tips to get you ready for your travel and vacations. Follow these quick tips and enjoy! 

  • Plan before you go
    1. Find out what type of medical/emergency services are available at your destination.
    2. Visit your treating physician to ensure your HAE is well-managed, and to update your prescriptions.
    3. Fill your prescription, and make sure you have enough medicine with you for your entire trip.
  • What to bring
    1. Doctors note - include your treatment plan and contact information for your doctor and medical team.
    2. Medications – Acute and Prophylactic (both, if you are on preventative therapy).
    3. Supplies – everything you will need to administer your medication safely.
  • Anticipate Transportation Needs
    1. If traveling by airplane – keep your medications with you in your carry on. You can safely pass through TSA with your therapies.
    2. If traveling by car, bus, or train – make sure to keep your medications at a safe temperature. Include ice or cold packs with your therapies.

Take a few minutes to review all of the tips presented in the Summer Travel Tips video available in the HAEA café HERE!



Lora Spotlight

HAEA Spotlight

"I have always said being an HAE patient is like trying to scream while being held underwater. Always trying to explain and tell your story over and over again about this life-threatening condition. However, in the last few years, I believe that it is a great time to be an HAE patient. Now, HAE patients have more HAE therapies in their homes than most emergency rooms. I look forward to spending the rest of my life doing “Lyndon’s walk across America for HAE”, visiting others in the HAE family through Lyndon’s walk, bringing Team Lyndon to many HAE IN-MOTION® 5K’s and attending all patient summits. I have very high hopes for the future of HAE patients as my granddaughter Ava has been recently diagnosed. I am thankful for them to have clinical trials, and for even more HAE therapies in the future. My biggest hope for the future of HAE patients is for there to be a cure. But even if we get a cure, we must still raise awareness so no one is misdiagnosed, and more importantly, no one ever dies again from HAE." – Lora (AL).

SR Registry

Your participation is vital to Advance HAE Research

Are you already a member of the HAEA's Advance HAE Scientific Registry, but have not been active recently?
Every Registry Report submitted advances HAE research!

 Check out your already submitted Registry data and any Reports waiting for you to submit HERE!

 If you are not already a Scientific Registry member, you can register to join HERE!


Brady Club Send your Story

For Brady Club Members

Brady Club Members - See your favorite jokes in the next edition of the Brady Club Activity Book! Email your best joke to lisa@haea.org and it may be featured in the next publication.

Brady Club Kids! What do you do to raise awareness for HAE? Do you do something at your school or in your community to teach people about HAE? Send us a photo and a few sentences telling us what you do and you might be featured in an upcoming version of the activity book! Email your awareness story to lisa@haea.org!  

 Click here to register for the Brady Club!


Follow the HAE Youth on Instagram!

Follow @HAEAyouth on Instagram to get updates and announcements about the HAEA youth programs. Our newly launched Instagram account is managed by a group of 6 HAEA social media interns who highlight patient stories, upcoming events, interesting HAE facts, and more!

If you are between the ages of 12 and 25 and registered to attend the upcoming patient Summit, you'll want to follow us on Instagram for teasers and important information about what to expect in Atlanta!

 Follow the HAEA Youth Instagram Account HERE!

Legislative Update
Lower Health Care Costs Act Summary

 Just prior to adjourning for the Memorial Day Congressional recess, the Senate’s Committee on Health, Education, Labor, and Pensions (HELP) released a discussion draft of the bipartisan Lower Health Care Costs Act. This legislation represents a comprehensive proposal to address drug pricing, health system transparency, affordability, and related hot-button topics. The HELP Committee is currently accepting community feedback on the proposal to craft and introduce a final bill.

Congress is expected to tackle a variety of high-profile healthcare issues, including “must-pass” items, prior to the end of the current fiscal year (September 30th) and this package will likely form the foundation of Senate efforts (the House is expected to take a different approach and emphasize patient access and protections for those with pre-existing conditions). The Lower Health Care Costs Act includes the provisions of interest listed below.

Title I- Ending Surprise Medical Bills: Advances patient protections for emergency services to ensure patient out of pocket costs are counted towards “in network” deductibles and that patients are billed appropriate amounts consistent with standard in-network care.

Includes requirements to provide pricing and related charges to patients up front as well as subsequent options to mediate billing disputes.

Title II- Reducing the Price of Prescription Drugs: Advances reforms to the patent and trademark system to promote and facilitate the entry of generic products into the market.

Closes a loophole to ensure that any products (such as insulin) that are reclassified as biologics or biosimilars after March of 2020 do not receive any additional patent exclusivity.

Reforms the citizen petition process to allow for proper grievances while preventing the system from being used to simply stymie or delay market entry for products.

Title III- Improving Transparency in Health Care: Bans “gag clauses” in contracting that might otherwise prevent health plans from seeing cost and quality data on providers or that might prevent access to de-identified claims data that could be used for quality improvement.

Restricts the use of “anti-tiering” and “anti-steering” clauses in contracts between providers and health plans, which could restrict the plan from directing or incentivizing patients to use specific providers and facilities with higher quality and lower prices.

Creates a non-governmental and non-profit entity for the purposes of improving the transparency of healthcare costs and establishes an advisory committee comprised of federal and non-federal members to advance the activities of this new entity.

Prohibits Pharmacy Benefit Managers (PBMs) from charging a plan sponsor, plan, or patient more for a drug than the PBM paid to acquire the drug while also requiring PBMs to pass on all savings and rebates they receive to the plan sponsor.

Initiates a study by the Government Accountability Office (GAO) on profit-sharing relationships between hospitals, contract management groups, and physician and ancillary services while making recommendations to improve oversight in this area.

Title IV- Improving Public Health: Initiates new public health activities focused on obesity, vaccinations, training of health professionals, and maternal and child health.

Title V- Improving the Exchange of Health Information: Seeks to enhance patient access to commercial health insurance information by facilitating the availability of claims data, in-network practitioners, and expected out-of-pocket costs.

If you would like more information or if you would like to participate in the HAEA’s advocacy efforts, please contact HAEA Patient Advocate, John Williamson at john@haea.org

2019 Events

Saturday, June 15, 2019 - Danada Forest Preserve, Wheaton, IL - (5K walk/run)

Register today for this great family-friendly HAEA event and help kick-off the 2019 HAE IN-MOTION® season. You are welcome to walk, run, or cheer, but don't miss a single one of these awesome events this year! Plan to join all of the great teams who have already started fundraising, advocating, and enjoying time with their new friends at a 2019 HAE IN-MOTION® event. The Wheaton event begins at 8:00 AM, followed by awards, breakfast, raffle and family activities! 

Register HERE!

Sunday, July 28, 2019 - Piedmont Park, Atlanta, GA (5K walk/run)

We are thrilled to announce that registration is open for the HAE IN-MOTION® 5K taking place on Sunday, July 28, 2019, at Piedmont Park in Atlanta, GA. This event will end the 2019 US HAEA National Patient Summit taking place at the Omni CNN Hotel in Atlanta, GA, and promises to be the largest 5K event of 2019! Shuttles will be provided from the Omni Atlanta Hotel at CNN Center to and from the park to allow all Summit attendees the opportunity to participate. Shuttle schedules will be posted at the Summit, with the race starting promptly at 8:30 am. Register early to secure your spot!

ALL 2019 Summit Participants MUST register HERE to ensure shirt size and bib number!

HAEA Headliners

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.


Many patients hosted local HAE awareness events!

- Derek J from Oakfield, NY presented HAE to his coworkers for hae day :-).
- Aaron, Sariah, and Belle educated Belle's class on HAE.
- Lora hosted a family day, along with a Meet & Greet, in memory of her daughter Lyndon.

Check out the HAEA Event Calendar here!

*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, mikemallory@haea.org, or 513-858-9370.

Pharming Webinar June 18th 2019

Webinar Link: https://haea.zoom.us/j/725228000  
Phone: +1 646 558 8656 (Webinar ID: 725 228 000)

Click here to say you're going!

The HAEA is a patient advocacy and research organization committed to actively engaging our community in a wide variety of grassroots 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 the 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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