HAEA in Action January 2020 Newsletter 2020

Happy New Year 2020!

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.

2020 promises to be a year filled with possibilities and exciting opportunities for our HAEA community. As we kick-off the year, we ask that you take some time to imagine all that you and your family can do to make 2020 an especially memorable year.

Warmest regards for a fantastic 2020,

Tony's signature

US HAEA President & CEO

Celebrating Thankuary!

Celebrating Thankuary!

In recognition of the incredible support that we received in 2019 from the HAEA community, we are calling this month Thankuary.

We want to thank all of you, who continue to support HAEA programs and services. Your commitment helps the HAEA make a difference in the lives of people affected by HAE.

For more information on the HAEA’s programs and services, visit www.haea.org.

Healthy New Year Resolutions

Healthy New Year Resolutions

The new year is a great time to make resolutions that can help you achieve a healthy and happy lifestyle. By setting easy activity goals, you can transform the way you feel each day. Here are just a few tips:

Focus on your HAE management plans for the year ahead. Follow these quick steps to ensure your HAE is under control.

Visit an HAE expert physician

Consider visiting an HAE expert physician. The experts and staff at the US Angioedema Center in San Diego, or the members of the US HAEA Medical Advisory Board throughout the country will work with you and your local treating physician to develop the treatment plan that allows you to live a full and productive life with HAE.

Please contact one of the HAEA Health Advocates who can help you with the coordination of an appointment, as well as provide information on how to apply for a travel grant.

For more information, please contact an HAEA Health Advocate at 866-798-5598 and we will be happy to assist you.

#BeyondHAE Podcast Series!

#BeyondHAE Podcast Series!

January's episode of the #BeyondHAE Podcast series is hosted by Maddie and is now available.  

Find the #BeyondHAE podcast on all major podcast platforms including iTunes and Spotify. Don't forget to subscribe to get an update when new episodes are available.

Listen to the Podcasts here!

Nico's Lunchbox

Did you Love Nico's Lunchbox?

We hope that you enjoyed Nico's lunchbox as much as we did! Now that you have read the first book, we are excited to announce that we are working on the second book in the series! Stay tuned for updates on the next book release, and how Nico continues learning about HAE and gets to meet other kids just like him. In case you missed it, you can still order Nico's Lunchbox. 

We would love to hear your thoughts about Nico's Lunchbox after reading it.

Please take a few moments to provide feedback here!

Order your copy today here!

HAEA Spotlight

HAEA Spotlight

Every month throughout 2020, we will spotlight a different patient and their unique HAE story. This month we are Spotlighting Sydney. We hope you enjoy following her story during the month of January.

"My name is Sydney and I am from Fort Worth, Texas. Having HAE has meant different things at different points in my life. My relationship with my diagnosis has evolved and changed over the course of my life. Early in my diagnosis living with HAE was scary and sometimes isolating but as I've grown and learned to adapt for my health the relationship has evolved. Now I'm to a point in my life where living with HAE feels hopeful and filled with advocacy.

My road to diagnosis was filled with questions, doubt, and swelling. I went to doctor after doctor having them tell me they don't know what could be causing my pain and symptoms. It is hard to be young and hear a doctor tell you that they don't know, when typically, you think of doctors knowing everything. I quickly learned that I am responsible for my own health and have to advocate for my needs. It is easy to feel overwhelmed but I try to focus on the feelings of determination and resilience." - Sydney

HAE and Medicare Webinar

HAE and Medicare Webinar

Medicare can be confusing, and even though the 2020 insurance enrollment period has ended, Medicare Advantage Plan members can still make changes to their plan up until March 31st.

Please plan on joining us for our special Medicare focused webinar on January 23rd.

Whether you are currently on Medicare and have questions, or are looking at Medicare as an option in the next couple of years, please join us for this important webinar. This will be a great opportunity to learn how to navigate Medicare coverage as it pertains to your HAE and get answers to your questions. 

Webinar Link: https://haea.zoom.us/j/405333422  
Phone: +1 646 558 8656 (Webinar ID: 405 333 422)

Click here to say you're going!

Youth Edition Webinar

Calling all Brady Club Kiddos! Mark your calendar for a webinar just for you!

Did you read the latest Brady Club Activity Book? Inside the Winter 2019 Activity Book we provided a recipe for Chocolate Chip Cookies, and shared Dana's Story about how she turned her love for baking chocolate chip cookies into a fundraiser for her friend coping with a rare disease. Join our webinar on February 6th to learn how you can do the same!

Webinar Link: https://haea.zoom.us/j/441091110  
Phone: +1 646 558 8656 (Webinar ID: 441 091 110)

Click here to say you're going!

HAEA Meet & Greet!

HAEA Meet & Greet!

The HAEA is planning more Meet and Greet events in 2020. These events are designed to offer 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.

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, meet and gain valuable information and support from others in the HAE community.

- Sunday, January 26th: Come join your HAE family for lunch at Oregano's Pizza in Old Town Scottsdale. 

Click to Register

- Sunday, February 23rd: Friends, family, and caregivers will come together for lunch at Seasons 52 in Atlanta, GA to meet their local HAE family, share stories, and learn more about the great programs offered by the HAEA. Will you be joining them?

Click to Register

For more information, please contact, Mike Mallory mikemallory@haea.org or (513) 858-9370. 

2020 HAE IN-MOTION® Fundraising / Awareness Events!

2020 HAE IN-MOTION® Fundraising / Awareness Events!

Fundraising & Awareness Events
Many patients have hosted their own events to raise awareness and support the great programs offered by the US Hereditary Angioedema Association. We have recently added a new web feature to help facilitate these great events. 

Do you have a great idea for an event? Want to host an event near you? Reach out to Mike Mallory at (513) 858-9370, or e-mail him at mikemallory@haea.org!

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