The HAEA is pleased to announce the 2021 HAEA Virtual Summit Series, which will take place from May-August 2021. Although we unfortunately cannot meet in person, the Virtual Summit will offer a comprehensive program that will cover:
The 2021 HAEA Virtual Summit Series will be presented in one-day events throughout the Summer, beginning May 16th, hae day :-), and will offer engaging live and on-demand events.
Stay tuned for information on the Virtual 2021 HAEA Summit Series Program!
The US HAEA is excited to announce our participation in Rare Disease Day 2021. On February 28th, rare disease communities around the world will honor what it means to be rare and raise awareness for over 300 million people with rare diseases.
We invite our members to support the rare disease and HAE communities by wearing your favorite blue shirt on February 28th. We hope to raise awareness for HAE and the rare disease community by using the hashtag #RareisProud on social media posts while wearing blue. When you post to social media wearing blue for Rare Disease Day, please tag the US HAEA to be included in a special photo collage of our proud rare members!
2021 is shaping up to be one of the most important years for HAEA grassroots legislative advocacy. Our Advocacy Team anticipates changes to national healthcare policies that are likely to have a significant impact on our community. We cordially invite you to participate in a webinar on Tuesday, February 9th at 6:30 PM ET during which we will discuss how you can participate to ensure our voices are heard in Washington and anywhere else where there are challenges that could hinder access to and reimbursement for HAE therapies.
Join us for the HAEA Advocacy Webinar on Tuesday, February 9th at 6:30 PM ET.
The webinar will cover
Fall 2021 Scholarship Applications are now open!
Are you planning to attend a college or university in the Fall of 2021? The HAEA helps students with a confirmed HAE diagnosis pursue their academic goals by reducing the financial burden associated with higher education. Applications for the Pam King HAEA Scholarship Program are open twice a year. We invite interested individuals to take advantage of this opportunity, and complete your application before March 31st.
As we begin the New Year, we encourage you all to be proactive about both your physical and mental health.
The HAEA Health Advocacy Team is here for you. Please reach out to us at (866) 798-5598 for assistance with: insurance issues, finding an HAE expert physician, updating your member information, if you want to join a virtual support group,or if you have an HAE related question.
Connect! Learn! Create!
The HAEA is hosting a series of virtual Meet & Greet events for HAEA youth and young adults that offer an opportunity to connect with peers while learning about what the HAEA has planned for them in 2021. We are also launching a fun social media project for all who participate!
Everyone who joins us for an event will receive a FREE #BeyondHAE swag bag with an exclusive #BeyondHAE t-shirt!
Connect with other youth with Hereditary Angioedema (HAE)! Learn about the HAEA’s youth programs! Create viral social media posts to raise HAE awareness!
Each event is age-specific. Register today to stay connected #TogetherApart!
For more information or questions, contact Lisa Facciolla at firstname.lastname@example.org.
Thank you to our sponsor, Takeda.
We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAEA community. The podcast series tells the stories of individuals affected by HAE with the goal of connecting our community through shared experiences. Make HAE Speaks a regular addition to your podcast playlist and listen today on all major podcasting platforms!
Episode 10: Hannah Carroll, an HAE patient, and HAEA team member, talks about her HAE journey, including growing up with an HAE diagnosis, attending school, and overall life while having HAE.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to email@example.com.
As people with HAE, we can often find that our diagnosis of HAE can shape the experiences we have in life. Many people find a positive outlet to channel that energy into, like our friend Alexa. While pursuing a career in medicine, Alexa realized how much her own experience as a person with HAE could help her in her understanding of patients with other chronic illnesses.
“Having HAE has given me a unique perspective of the career I am pursuing. Although dealing with HAE on top of school has been challenging at times, I believe that I will eventually be a better and more empathetic doctor because of it.”
Do you have an example of how you’ve channeled your HAE diagnosis into something positive?
Reach out to the HAEA Advocates at (866) 798-5598 or email firstname.lastname@example.org for more information on how to share your story.
Every month throughout 2021, we’re spotlighting healthcare workers in the HAE community. This month we are spotlighting Jack. Thank you for sharing your incredible story with us, Jack!
“Hello, my name is Jack. I'm from Redlands, CA, but I live just outside of St. Louis, MO now. Living with HAE makes me unique. I choose to not let HAE define me, but rather help define it to others. It has driven me to never give up and has helped me find the strength that I didn't know I had.
At a very young age, I had to be a caregiver. I grew up watching my family suffer from intense abdominal swelling on a regular basis. Since I was not having any swells at the time, I was the one that often helped take care of them. This gave me the passion that I have to care for others. I enjoyed bringing joy and comfort to my family when they were in need. It only made sense to continue on helping others in the medical field. I believe having a rare disease has given me a sense of compassion and understanding that helps me connect with the people that I care for. We all have a different story to tell, it's when you can be open with yours that people really listen. It makes it much easier to help someone when they connect with you and understand where you are coming from.
I have been in healthcare for over 8 years now and in that time I have helped many people. The one thing that I have noticed that helped people get through their toughest days is a sense of community. Everyone needs someone there for them. None of us are alone in this battle with HAE. Make as many connections as you can and build your support group. Take care of yourself and those around you.”
To share your story, please contact an HAEA Advocate at (866) 798-5598, or email email@example.com.
The Brady Club provides kids opportunities to learn about HAE and have fun at the same time! It’s FREE to join, and members get tons of perks to make them feel special!
Once registered, kids receive:
If you and your family haven’t read the HAEA Children’s Book series, the first two books in the series are now available to order!
The HAEA Children’s Book Series is a timeless resource for children learning to cope with their HAE. These popular books follow the adventures of Nico and his friends as they learn about HAE, build new relationships, and explore the world around them.
“As a four year old with HAE, my daughter doesn't know another child that is going through what she goes through. Nico felt relatable to her and gave her the feeling that she wasn't alone in her experiences!” - John
BONUS! With every order, we’ll include a FREE collectible sticker and an activity guide. Your kids will enjoy hours of fun as they complete puzzles, scavenger hunts, virtual trips, and more.
For more information or questions, please contact firstname.lastname@example.org.
The #BeyondHAE Podcast series is a podcast produced BY young people with HAE FOR young people with HAE. Hear stories from young people affected by HAE, as they share the ways that they have learned to navigate life with HAE or support a diagnosed family member.
Episode 24 is hosted by ReyJeanne and her friends from school. They talk about supporting ReyJeanne through some of the challenges that she experienced in college. From learning how to give her emergency medication, supporting her during stressful times, and knowing her emergency plan. Don't miss this amazing episode that provides a glimpse into what it's like to be in college while managing your HAE.
As we embrace the possibilities that the new year has to offer, make 2021 the year to join the US HAEA’s Advance HAE Scientific Registry and enable us to continue to provide researchers with the biosamples and information needed to continue critical HAE research!
Will you help pave the path for future generations?
If you are someone with HAE or anyone who has a blood relative with HAE, your participation facilitates research for new and more effective medicines, better clinical care, and ultimately, enhanced quality of life for all affected by HAE. We have come a long way, but there is still more work to be done - join the Advance HAE Scientific Registry and support research into the next generation of HAE therapies!
If you are already a member of the registry, thank you for your participation! Please ensure you are sharing your information by submitting attack reports and quarterly reports through the portal, as this information is vital to researchers.
Download the FREE Advance HAE App today from the Apple App Store!
The Advance HAE mobile app makes it quick and easy to create your own personal record of life with HAE, storing all of the information on your HAE attacks and your HAE therapy/therapies. The app also allows you to create personalized, user-friendly graphs of the data you enter. You can also download a printer-friendly copy of your data to share with your physician, or use for an at-a-glance view of your medication administration and attack history.
Did you know? HAEA friends who are using the HAE medicine Ruconest can join the US HAEA Advance HAE Scientific Registry and Ruconest Safety Registry!
Are you currently: diagnosed with HAE, at least 13 years of age, prescribed Ruconest, and not currently participating in a clinical trial for HAE? If so, you can provide vital information about how you live and manage your HAE while taking Ruconest by joining the Ruconest Safety Registry! The registry will close in June this year, and we need your help to ensure we have the safety data needed!
Message from Takeda
Takeda is now recruiting HAE with Normal C1-Inhibitor patients for their clinical trial. Individual sites will comply with state and local guidelines and safety protocols for bringing patients into clinics. There are 11 clinical trial sites actively enrolling with additional sites being activated soon.
If you have HAE with Normal C1-Inhibitor, and are interested in learning about new clinical studies to prevent attacks, please contact John Williamson at email@example.com to see if there will be an active clinical trial site in your area.
10 Lessons Learned About Living with a Rare Disease: A Conversation with a Patient Who Has HAE and a Doctor Who Treats It
Webinar Link: https://haea.zoom.us/j/96379694735
Phone Number: +1 646 558 8656 (Webinar ID: 963 7969 4735)
Sponsored by: Takeda
Plan a fun night to meet other HAEA members from your community! The HAEA Virtual Meet & Greet Events are a perfect way to reach out and meet others affected by HAE in your area. If you are interested in participating in an HAEA Virtual Meet & Greet please check out the HAEA Events Calendar, or reach out to Mike Mallory at firstname.lastname@example.org.
What would you tell someone who is considering attending a future HAEA Meet & Greet?
“I learned about all the programs and support groups HAEA offers. Have a pen and paper because it's a lot of good information.” - Sheryl.
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
- Tuesday, February 16, 6:30 PM PT
- Tuesday, March 16, 6:30 PM CT
Register today to receive a FREE HAEA swag bag after the event!
For more information, please contact Mike Mallory at email@example.com or (513) 858-9370.