US Hereditary Angioedema Association

Commemorating 20 years of Dedicated Service to Our Fellow HAE Patients

Twenty years ago, anabolic steroids (male hormones) were the only medicine available for those of us with HAE. Appalled by the high death rate, pain, suffering, and disability brought by this relatively unknown and mysterious condition, a small group of patients and caregivers decided to band together and take matters into their own hands. These pioneers established the US HAE Association (HAEA) and imagined that they could find a way to improve patient quality of life by: Building a strong patient community and cadre of interested physicians; encouraging pharmaceutical company investment in modern HAE therapies; and recruiting HAE friends to participate in clinical trials. Through consistent hard work and perseverance in the midst of numerous setbacks, the HAEA led the charge that produced 7 life-changing FDA-approved medicines, as well as a current membership base of more than 5600 people.

As we commemorate the US HAEA’s 20th year anniversary and prepare for our July 2019 National Patient Summit in Atlanta, I invite you all to “Imagine the Possibilities” of what the next twenty years might bring!

The US HAEA is more committed than ever to the fundamental principle that has always guided us -- helping every HAE patient lead a life that is unhindered by HAE. As an HAE community, we have made great strides in the past 20 years, but vitally important work remains. Going forward we must protect access to the currently available HAE therapies, while pushing for research that brings even better medicines to our children and future generations.

As we celebrate the HAEA’s 20-year anniversary we plan to update much of the print materials and information that the Association makes available to you, our patient community. These resources fully encompass the latest HAE news, research, therapies, and breakthroughs. We have taken the opportunity to evaluate how our patient community proactively shares information about HAE, and have worked to anticipate how your needs can be best supported in the future. With this in mind, we have also updated the US HAEA logo to create a more modern and graphically appealing look throughout all of our patient-centered materials. Not only will you see the new logo on the www.haea.org webpage, but also throughout all social media pages, the HAEA Café, and all print materials you request. You will also see, new informational resources that you can share with your employer, school, or doctor’s office. Stay tuned on when these new, free resources will be available.

2019 HAEA National Patient Summit Registration Opens This Month!

As announced last month, the 2019 HAEA National Patient Summit will be held in Atlanta, Georgia, from July 26-28, 2019. The Summit will commemorate the 20-year anniversary of dedicated patients and families joining together to establish this strong and vibrant HAEA community.

The Summit theme for 2019— ‘Imagine the Possibilities’—will frame a program that provides a sense of the past, a realistic assessment of the present, and a positive look to the future. This 20th-anniversary HAEA gathering will offer an innovative format and unique programs that further unite our HAE community and guarantee a memorable and empowering experience for all.

Registration will open online on Monday, January 14th, 2019 at www.haea.org. The Summit registration page will include conference details, information on conference grants, youth and young adults’ special tracks, hotel accommodation and ground transportation, Atlanta attractions, and much more.

If you wish to attend the Imagine the Possibilities – 2019 HAEA National Patient Summit but need assistance with travel and/or hotel expenses, you can apply for an HAEA Summit Conference Grant. A limited number of grants will be awarded through a lottery process that will open on January 14th and close on February 28th. HAEA Summit Conference Grants will be available for hotel accommodation, air travel and/or ground transportation. NOTE: To receive a grant, you must agree to attend all SUMMIT sessions. Ushers at the SUMMIT will scan badges before each session to record attendance. We look forward to a great Summit! See YOU there!

Add A Little Self Care to Your New Year's Resolutions

As we all kick off the New Year, we hope you enjoy a healthy and happy lifestyle, including taking the time to experience a little self-care! This year, join other HAE patients, caregivers, and family members as they share their day-to-day life experiences in an HAEA Virtual Support Group. A support group can help you cope better with HAE challenges and offer the opportunity to make connections with others facing similar situations. For more information or to join a group, please contact HAEA Health Advocate, Troyce Venturella at troyce@haea.org.

Sign up your kids for the Brady Club and receive the Brady's Winter Activity Book. The Brady Club is a fun, interactive online space for kids to learn about HAE! When you log in, visit the Submit Your Story section where your kids can submit their superhero story and receive a FREE Brady Club t-shirt.

Join us on January 24th for the "All About the Brady Club Webinar". This Youth Edition Webinar is designed for younger patients (12 and under) and their families to learn about what the Brady Club has to offer. Come and learn more about how to get the most out of this excellent online resource.

FALL 2019 Pam King HAEA Scholarship Application Period!

Fall 2019 Pam King HAEA Scholarship Applications will open on February 1. For more information about the Pam King HAEA Scholarship program, visit: http://haeascholarship.org/ Scholarships are available to US citizens who are diagnosed with HAE and are awarded to students who demonstrate the characteristics that Pam brought to the HAE community: relentless hard work, resilience, courage, and a passion for giving back to the HAE community.

Calling All HAE Youth and Young Adults!

As you kick off the New Year, imagine what you could do to change the world around you. Take a moment to think about what you can do to educate, advocate and inspire others about HAE! Sign up for the HAEA Youth Leadership Council (YLC) for new opportunities to make a difference along with your peers.

Your Quarterly Report - looking back at the last months of 2018 - is now available on the Registry’s online portal. Quarterly Reports contain questions that provide a complete picture of how you are living with HAE. Researchers use all of your Registry Reports to understand your health over time.

We would like to thank everyone who have already updated their information, and if you have not yet had the chance, please update your membership information soon. You won’t want to miss any of the great 2019 HAE news!

The HAEA is planning a Meet and Greet event in your area. This Meet and Greet is designed to give you 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.

This program offers you and your family member or caregiver the opportunity to: Learn about HAEA programs and services available to you, hear from HAEA staff, ask questions, meet and gain valuable information and support from others in the HAE community.

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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