HAEA in Action July 2019 Newsletter

HAEA Two-day Symposium with Health Insurers

HAEA Conducts Two-Day Information Sharing Symposium with Health Insurers
Marking a “first” for a patient organization, the HAEA organized and conducted a two-day educational symposium for major health insurers on June 5-6 in Chicago, Illinois. The HAEA contingent - CEO Tony Castaldo, Managing Director Michelle Cuevas, Project Manager Christine Selva, and US HAEA Angioedema Center Clinical Director, Dr. Marc Riedl - provided the insurance company attendees with a comprehensive overview of HAE while emphasizing the horrifying physical and psychological burden experienced when the condition is inadequately treated.

The initial part of the meeting focused on educating the insurers about the indications and uses for each of the FDA approved modern HAE medicines. The sessions that followed centered around discussion of the value of HAE therapies in terms of dramatic improvements in the quality of life for all who are affected by HAE; patients, caregivers, and family members. The HAEA emphasized that modern HAE medicines yield a positive economic impact by (1) reducing the need for intensive medical treatment such as ER visits and hospitalizations, and (2) allowing patients to get off disability, pursue educational opportunities, maintain employment, and generally lead a fulfilling life.

The symposium is part of the HAEA’s ongoing advocacy strategy which aims at creating an environment where every patient gets access to and reimbursement for HAE medicines. The insurance company attendees affirmed that they now have a better understanding of HAE as well as the value and overall positive impact of modern therapies. The HAEA continues to apply learnings, like those gathered during the symposium to expand our insurance industry HAE education and awareness outreach activities.

HAEA Summit
US HAEA National Patient Summit registration closes on July 3rd

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.

Register HERE!

Avi Gupta, Teen Jeopardy

Congratulations to HAEA Youth Leadership Council member, Avi Gupta for becoming the first place winner of Jeopardy's Teen Tournament!  Well done Avi!

HAEA Summer Tips

Stay Safe in the Summer Heat - Keep Cool and Hydrated

Your HAEA Health Team wants you to fully enjoy the sunny summer days! Here are some quick and easy tips to have a safe time in the summer heat.

1. Always use sunscreen. Remember that you should reapply sunscreen as indicated on the package.

2. Drink plenty of water and other fluids, even if you do not feel thirsty.

3. Take several breaks from the heat, especially midday when the sun is hottest.

4. Remember to keep your HAE medication at the correct temperature.

5. Wear loose, lightweight, light-colored clothing.

If you have any questions or need assistance, please contact the HAEA Health Team!

Noah Spotlight

HAEA Spotlight

"I began my advocacy at 9 years old after the late Mrs. Pamela King and my mother encouraged me to give a speech at the HAEA 2013 Patient Summit in Florida. Ever since then, I have tried to raise awareness wherever I go, including speaking at colleges, sports events, conferences, and internationally. I have even spoken to all of my teachers and staff about HAE. Years ago, I would never believe the things I'm doing today.

Imagining the possibilities, to me - is like saying "the sky is the limit". The possibilities are endless, and with each passing day, we are getting closer to overcoming HAE. With every breath we take, we are given the opportunity to better ourselves and others. It is up to us to embrace them. I hope to inspire and to empower other patients to embrace all that is positive and to believe in their own dreams.

I hope that other patients are encouraged to share their story and to raise awareness." - Noah

SR Registry

The HAEA Scientific Registry - Together We Can Advance HAE Research!

Advance HAE Scientific Registry members hold the key to unlocking the remaining mysteries of HAE! Are you a Registry member? If not, join today!
Who can join?   Anyone with HAE, or Anyone who has a blood relative with HAE.

If you are already a Registry member, watch for your Q2 Registry Quarterly Report, available in July!

Thank you for advancing HAE research!

 If you are not already a Scientific Registry member, Register to join!

Brady Club Summer Activity Book

Brady Club Activity Book

The summer 2019 Brady Club Activity Book is getting ready to be mailed out to members. If you and your kids don't already receive the Activity Book, register for the Brady Club today! The Activity Book is filled with fun games and activities, HAE resources and information for kids, stories from other kids in the community, and more!

 Click here to register for the Brady Club!

Instagram Account

Calling all HAE Youth - Follow us on Instagram!

Find our new page @haeayouth, on Instagram - designed for HAE youth community members. Follow us for updates on events, teasers for the upcoming Summit, stories from HAE youth in the US, from around the world, and so much more.

 Follow the HAEA Youth Instagram Account HERE!

2019 Events

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

On July 28th, join fellow members of the HAEA patient community, families, friends, and our industry partners to RUN, WALK or CHEER, but most importantly HAVE FUN! All for a cause near and dear to our hearts - raising HAE awareness and funding for patients who suffer from Hereditary Angioedema (HAE). This event will close 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!

Registration is FREE, and includes:

High-tech race tee!

Finisher Medal for ALL participants! Swag Bag! Post-race

Breakfast Foods!

And More!

Register early to secure your spot!

Please remember that registration for the 5K is separate from your Summit registration, so be sure to register early to confirm your spot and shirt size here!

HAEA Headliners

The HAEA Headliners section of our Newsletter is 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.

Wonderful Wheaton

Wonderful Wheaton

The HAE IN-MOTION® 5k was once again a wonderful success thanks to all the great teams, runners and walkers who did an outstanding job fundraising and promoting to make this the biggest 5k event we have hosted in Wheaton, IL! The clouds parted long enough to allow for a spectacular time for every one of the over 200 participants who came out to support the HAEA.

Looking forward to the next HAE IN-MOTION® event in Atlanta, GA on July 28th!

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 HAEA Patient Advocate Mike Mallory at, mikemallory@haea.org, or 513-858-9370.

CSL Behring Webinar July 10th 2019

Webinar Link: https://haea.zoom.us/j/240273644
Phone: +1 646 558 8656 (Webinar ID: 240 273 644)

Click here to tell us you're attending!

Youth Webinar July 15th 2019

Join us for this Youth Edition Webinar as we provide an overview of the Summit Youth Program activities. We have an incredible youth program planned this year and we look forward to seeing you in just a couple weeks. This year we have two specialized schedules and we want to give you some details on everything that will be going on. If you are interested in learning more about what to expect in Atlanta, this is a webinar you won't want to miss!

Webinar Link: https://haea.zoom.us/j/725228000  
Phone: +1 646 558 8656 (Webinar ID: 642 648 104)

Click here to tell us you're attending!

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


If you would like to unsubscribe to this newsletter, please click the link below to the left "unsubscribe to newsletter".

Twitter Facebook You Tube instagram

Copyright © US Hereditary Angioedema Association