Hereditary Angioedema Association - HAEA

Hereditary Angioedema Association - HAEA Founded and staffed by HAE patients and HAE patient caregivers, we are a non-profit patient advocacy organization dedicated to serving persons with HAE.
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📌Want to meet other HAE patients and caregivers in the Atlanta area? REGISTER NOW for the HAEA Meet & Greet on Sunday, F...
02/11/2020
Atlanta, GA Meet & Greet

📌Want to meet other HAE patients and caregivers in the Atlanta area? REGISTER NOW for the HAEA Meet & Greet on Sunday, February 23rd at 11:00 AM at Seasons 52, in Atlanta. This is a great opportunity for patients, families, and friends to learn about HAEA programs and support services available to you, hear from HAEA staff, ask your HAE related questions, and meet others in your local HAE community. The event is FREE. REGISTER here: https://bit.ly/2ptPaJn #IMAGINEthePossibilities HAEAMeetandGreet

The HAEA is planning a Meet and Greet event in your area and we would love for you to join us on February 23rd, 2020 at 11:00 for lunch.

💖#RareDiseaseDay is February 29th! Help support HAE patients and their families by making a donation to the HAEA! Your c...
02/10/2020

💖#RareDiseaseDay is February 29th! Help support HAE patients and their families by making a donation to the HAEA! Your contribution makes a difference in the lives of rare disease patients! For more information on how you can support research for HAE rare patients, contact Mike Mallory at [email protected] or call (513) 858-9370. #ImaginethePossibilities #HAE #HereditaryAngioedema

🔬#AdvanceHAE Have you completed your Advance HAE Scientific Registry Quarterly Report? Quarterly Reports help show a com...
02/10/2020

🔬#AdvanceHAE Have you completed your Advance HAE Scientific Registry Quarterly Report? Quarterly Reports help show a complete picture of how you are living with HAE, as well as provide valuable information needed to advance research. This is an important way in which you can pay it forward to the HAE community. Fill out your Quarterly Reports here: https://bit.ly/2HrVAkv. Not yet a member of the Advance Scientific Registry? Sign up at https://bit.ly/38kDyZS or contact Sherry Swanson at [email protected]! #IMAGINEthePossibilities

📌Attention HAE patients with normal C1 Inhibitor – there’s a NEW Clinical Trial! Anyone with questions can call or send ...
02/09/2020

📌Attention HAE patients with normal C1 Inhibitor – there’s a NEW Clinical Trial! Anyone with questions can call or send an email to John Williamson at (866) 798-5598 or [email protected]. Initial clinical trial sites will be in: Birmingham, Alabama; Scottsdale, Arizona; San Diego, California; Colorado Springs, Colorado; Chevy Chase, Maryland; Ann Arbor, Michigan; St. Louis, Missouri; and Columbus, Ohio. #HAE #HereditaryAngioedema #ClinicalTrials

🎓 💻 APPLY for the Pam King HAEA Scholarship Program NOW! Scholarships are available to US citizens who are diagnosed wit...
02/08/2020

🎓 💻 APPLY for the Pam King HAEA Scholarship Program NOW! Scholarships are available to US citizens who are diagnosed with HAE and are awarded to college students who demonstrate the characteristics that Pam brought to the HAE community: relentless hard work, resilience, courage, and passion. Don’t miss out on this opportunity to get the financial support you need to pursue your dreams. Click HERE to APPLY: https://bit.ly/2GAOEhR #PamKingHAEAScholarship #IMAGINEthePossibilities

🍪#Cookies4HAE 🍪In Case You Missed the Cookies4HAE Webinar with Dana! WATCH the Webinar on YouTube now! SUBSCRIBE to the ...
02/07/2020

🍪#Cookies4HAE 🍪In Case You Missed the Cookies4HAE Webinar with Dana! WATCH the Webinar on YouTube now! SUBSCRIBE to the HAEA YouTube Channel TODAY (ushaea)! CLICK on the BELL on our Channel to allow YouTube to send you notifications every time we UPLOAD a new VIDEO! Check out the exclusive YOUTH PLAYLIST here: https://youtu.be/BNps8zAID00 #HAEAwebinars #HAEAyouth #YLCcouncil

🔬ATTENTION – there’s a current clinical trial underway! Right now, patients are being enrolled in the APeX-S study, a wo...
02/07/2020

🔬ATTENTION – there’s a current clinical trial underway! Right now, patients are being enrolled in the APeX-S study, a worldwide clinical research study to investigate the long-term safety of an investigational oral medication to prevent Hereditary Angioedema (HAE) attacks. This is your chance to be a part of making history for HAE patients. If you have Type I or II HAE, and are interested in learning about an oral medication that could become an alternative to injections or infusions to prevent attacks, please contact John Williamson at [email protected] to see if you qualify. #ClinicalTrial #HAEAresearch #HAE #HereditaryAngioedema

✅#MeetSherry "I am a caregiver to my daughter Lillian (11) who has Hereditary Angioedema (HAE). Lillian is the first in ...
02/06/2020

✅#MeetSherry "I am a caregiver to my daughter Lillian (11) who has Hereditary Angioedema (HAE). Lillian is the first in our family to be diagnosed with HAE. Since we were unaware of the condition, the diagnosis was difficult. She began to swell at 6 months old and she was finally diagnosed at the age of 3. Thankfully for Lillian, it was also the year that the first FDA HAE medication was approved. Her HAE journey has also given her a unique zest for life and a spirit so many love, something I will always be thankful for!” – Sherry Swanson. Reach out to Sherry at [email protected]! Follow Sherry STORY! #HAEAStaff #HAE #HereditaryAngioedema #IMAGINEthePossibilities

🚨Attention Charlotte HAE patients and caregivers! 🚨Looking to learn more about HAE and your local HAE family? Join us fo...
02/05/2020
Charlotte Meet & Greet

🚨Attention Charlotte HAE patients and caregivers! 🚨Looking to learn more about HAE and your local HAE family? Join us for an HAEA Meet & Greet on Sunday, March 8th at 12:00 PM at Rooster's Wood-fired Kitchen. This is your chance to find out about HAEA programs and services available to you, hear from HAEA staff, ask your HAE questions, and share with others in your local HAE community. REGISTER here: https://bit.ly/2QNE9hm #IMAGINEthePossibilities #HAEAMeetandGreet

The HAEA is planning a Meet and Greet event in your area and we would love for you to join us on  March 8th, 2020 at 12:00 for lunch.

📌We’re back in Atlanta! Join us in just 18 DAYS for an HAEA Meet & Greet on Sunday, February 23rd at 11:00 AM at Seasons...
02/04/2020
Atlanta, GA Meet & Greet

📌We’re back in Atlanta! Join us in just 18 DAYS for an HAEA Meet & Greet on Sunday, February 23rd at 11:00 AM at Seasons 52. This is a great opportunity for patients, families, and friends to learn about HAEA programs and services available to you, hear from HAEA staff, ask your HAE questions, and meet others in your local HAE community. REGISTER here: https://bit.ly/2ptPaJn #IMAGINEthePossibilities HAEAMeetandGreet

The HAEA is planning a Meet and Greet event in your area and we would love for you to join us on February 23rd, 2020 at 11:00 for lunch.

🔬#ScientificRegistry #AdvanceHAE Your Quarterly Report is NOW available! Quarterly Reports help show a  complete picture...
02/03/2020

🔬#ScientificRegistry #AdvanceHAE Your Quarterly Report is NOW available! Quarterly Reports help show a complete picture of how you are living with HAE, as well as provide valuable information needed to advance research. Click here to fill out your Quarterly Reports: https://bit.ly/2HrVAkv Not yet a member of the Advance Scientific Registry? Start off the new year off by joining and helping to advance HAE research! Sign up at https://bit.ly/38kDyZS or contact Sherry Swanson at [email protected]!
#IMAGINEthePossibilities

🔴Attention HAE patients with normal C1 Inhibitor! NEW Clinical Trial! Anyone with questions can call or send an email to...
02/02/2020

🔴Attention HAE patients with normal C1 Inhibitor! NEW Clinical Trial! Anyone with questions can call or send an email to John Williamson at (866) 798-5598 or [email protected]. The initial clinical trial sites will be in: Birmingham, Alabama; Scottsdale, Arizona; San Diego, California; Colorado Springs, Colorado; Chevy Chase, Maryland; Ann Arbor, Michigan; St. Louis, Missouri; Columbus, Ohio. #HAE #HereditaryAngioedema #ClinicalTrials

💡#HAEASpotlight "My name is Jenn, and I’m from Cadillac, MI. My Hereditary Angioedema (HAE) is something that is a major...
02/02/2020

💡#HAEASpotlight "My name is Jenn, and I’m from Cadillac, MI. My Hereditary Angioedema (HAE) is something that is a major part of my life. I have no idea when an attack is going to strike and what I am going to have to miss out on because of it.” – Jenn (Michigan). We're SPOTLIGHTING Jenn's incredible JOURNEY. Follow her STORY on Instagram and Facebook! #HAEASpotlightJenn #IMAGINEthePossibilities #HAEA20years

📚#NicosLunchbox Did you LOVE Nico's Lunchbox? Now that you have read the first book, we are excited to announce that we ...
02/01/2020
Donate to Nico's Lunchbox - Books

📚#NicosLunchbox Did you LOVE Nico's Lunchbox? 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. Make sure to grab a copy for your family today at :https://bit.ly/353kQo1 #HAEAkids #ImaginethePossibilities

Nico's Lunchbox is now AVAILABLE! The US HAEA has teamed up with children’s author Caryn Sonberg Seiler to develop a three-book series that will help kids learn about Hereditary Angioedema in a relatable and interesting way.

🎓Applications for the Fall 2020 Pam King HAEA Scholarship Program are NOW OPEN! Scholarships are available to US citizen...
02/01/2020

🎓Applications for the Fall 2020 Pam King HAEA Scholarship Program are NOW OPEN! Scholarships are available to US citizens who are diagnosed with HAE, and are awarded to college 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. CLICK HERE to APPLY: https://bit.ly/2GAOEhR #PamKingHAEAScholarship #IMAGINEthePossibilities

✅REGISTER NOW Atlanta! Connect with us for the HAEA Meet & Greet Event on Sunday, February 23rd at 11:00 AM at Seasons 5...
01/31/2020
Atlanta, GA Meet & Greet

✅REGISTER NOW Atlanta! Connect with us for the HAEA Meet & Greet Event on Sunday, February 23rd at 11:00 AM at Seasons 52. This is a great opportunity for patients, families, and friends to learn about HAEA programs and services available to you, hear from HAEA staff, ask your HAE questions, and meet others in your local HAE community. REGISTER here: https://bit.ly/2ptPaJn #IMAGINEthePossibilities HAEAMeetandGreet

The HAEA is planning a Meet and Greet event in your area and we would love for you to join us on February 23rd, 2020 at 11:00 for lunch.

🎙️New #BeyondHAE podcast episode is now available! February's episode of the #BeyondHAE Podcast series is hosted by Luke...
01/31/2020
#BeyondHAE Youth Produced Podcast • A podcast on Anchor

🎙️New #BeyondHAE podcast episode is now available! February's episode of the #BeyondHAE Podcast series is hosted by Luke, and is now available. Click here to listen to our latest episodes https://anchor.fm/haeayouth. #BeyondHAE #HAE #HereditaryAngioedema

The BeyondHAE Podcast is a series dedicated to serving young people affected by Hereditary Angioedema. Hear from a different host each episode as they share stories of perseverance, activism, and support. We hope that you find strength in listening to stories from HAEA community members. Everyone ha...

➡️ #MeetSherry "My favorite thing about working for the HAEA is being able to help patients. There is nothing better to ...
01/30/2020

➡️ #MeetSherry "My favorite thing about working for the HAEA is being able to help patients. There is nothing better to me than seeing a patient that has finally found a diagnosis often after years of searching for answers. Seeing these patients able to live their daily life without pain and suffering because they now have access to therapy is wonderful and, most of all, giving patients the support they need and having them part of our HAEA family!” – Sherry Swanson. Reach out to Sherry at [email protected]! Follow Sherry STORY! #HAEAStaff #HAE #HereditaryAngioedema #IMAGINEthePossibilities

⚠️ATTENTION – there’s a current clinical trial underway! Right now, patients are being enrolled in the APeX-S study, a w...
01/30/2020

⚠️ATTENTION – there’s a current clinical trial underway! Right now, patients are being enrolled in the APeX-S study, a worldwide clinical research study to investigate the long-term safety of an investigational oral medication to prevent Hereditary Angioedema (HAE) attacks. This is your chance to be a part of making history for HAE patients. If you have Type I or II HAE, and are interested in learning about an oral medication that could become an alternative to injections or infusions to prevent attacks, then please contact John Williamson at [email protected] to see if you qualify. #ClinicalTrial #HAEAresearch #HAE #HereditaryAngioedema

🚩Attention Charlotte HAE patients and caregivers! Join us for the HAEA Meet & Greet Event on Sunday, March 8th at 12:00 ...
01/29/2020
Charlotte Meet & Greet

🚩Attention Charlotte HAE patients and caregivers! Join us for the HAEA Meet & Greet Event on Sunday, March 8th at 12:00 PM at Rooster's Wood-fired Kitchen. This is a great opportunity for patients, families, and friends to learn about HAEA programs and services available to you, hear from HAEA staff, ask your HAE questions, and meet others in your local HAE community. REGISTER here: https://fundraise.haea.org/event/charlotte-meet-and-greet/e258179 #IMAGINEthePossibilities HAEAMeetandGreet

The HAEA is planning a Meet and Greet event in your area and we would love for you to join us on  March 8th, 2020 at 12:00 for lunch.

✅Healthy New Year Resolutions from the HAEA Health Team! For more information, please contact an HAEA Health Advocate at...
01/28/2020

✅Healthy New Year Resolutions from the HAEA Health Team! For more information, please contact an HAEA Health Advocate at 866-798-5598 and we will be happy to assist you. #HAEAhealth #HAE #HereditaryAngioedema

🚨ATTENTION ATLANTA PATIENTS! 🚨Connect with us for the HAEA Meet & Greet Event on Sunday, February 23rd at 11:00 AM at Se...
01/28/2020
Atlanta, GA Meet & Greet

🚨ATTENTION ATLANTA PATIENTS! 🚨Connect with us for the HAEA Meet & Greet Event on Sunday, February 23rd at 11:00 AM at Seasons 52. This is a great opportunity for patients, families, and friends to learn about HAEA programs and services available to you, hear from HAEA staff, ask your HAE questions, and meet others in your local HAE community. REGISTER here: https://bit.ly/2ptPaJn #IMAGINEthePossibilities HAEAMeetandGreet

The HAEA is planning a Meet and Greet event in your area and we would love for you to join us on February 23rd, 2020 at 11:00 for lunch.

🔬#ScientificRegistry #AdvanceHAE Your Quarterly Report is NOW available! Quarterly Reports contain questions that provid...
01/27/2020

🔬#ScientificRegistry #AdvanceHAE Your Quarterly Report is NOW available! Quarterly Reports contain questions that provide a complete picture of how you are living with HAE, as well as valuable information needed to advance research. Click here to fill out your Quarterly Reports: https://bit.ly/2HrVAkv. Not yet a member of the Advance Scientific Registry? Start off the new year off by joining and helping to advance HAE research! To join, click here https://www.haea.org/form/registry or contact Sherry Swanson at [email protected]!
#IMAGINEthePossibilities

🙏#Thankuary As we wrap up Thankuary, our month of gratitude, we’re sharing a story about the true impact that donations ...
01/27/2020

🙏#Thankuary As we wrap up Thankuary, our month of gratitude, we’re sharing a story about the true impact that donations to the HAEA have on the lives of patients!
“It was because of the travel grant, that I was able to go see an HAE expert. My experience in the Angioedema Center was amazing. I was very ill walking in the door and they were calm and caring. They explained all the different types of HAE and the treatments at the time. After the visit, they worked with me, my local doctor, and insurance to help get the correct medicines. They were always on hand to talk to and help. I am truly grateful to the Angioedema Center and the Hereditary Angioedema Association (HAEA). Without them, I may not be here today.” –Jenn.
Your commitment helps the HAEA make a difference in the lives of people affected by HAE. #HAE #HereditaryAngioedema

📣 HAEA staff Mike Mallory, John Williamson and Lois Perry participated in the HAEA’s Meet & Greet event in Phoenix! Than...
01/26/2020

📣 HAEA staff Mike Mallory, John Williamson and Lois Perry participated in the HAEA’s Meet & Greet event in Phoenix! Thank you to all our participants for an amazing educational gathering! Check out the HAEA event calendar here: https://bit.ly/30UADEZ. For more information about the HAEA Meet & Greet Program or if you wish to attend one near you, contact HAEA Patient Advocate, Mike Mallory at [email protected] or (513) 858-9370. #IMAGINEthePossibilities
#HAEAMeetandGreet

🚩ATTENTION ATLANTA PATIENTS! Connect with us for the HAEA Meet & Greet Event on Sunday, February 23rd at 11:00 AM at Sea...
01/26/2020
Atlanta, GA Meet & Greet

🚩ATTENTION ATLANTA PATIENTS! Connect with us for the HAEA Meet & Greet Event on Sunday, February 23rd at 11:00 AM at Seasons 52. This is a great opportunity for patients, families, and friends to learn about HAEA programs and services available to you, hear from HAEA staff, ask your HAE questions, and meet others in your local HAE community. REGISTER here: https://fundraise.haea.org/event/atlanta-ga-meet-and-greet/e258160 #IMAGINEthePossibilities HAEAMeetandGreet

The HAEA is planning a Meet and Greet event in your area and we would love for you to join us on February 23rd, 2020 at 11:00 for lunch.

💡#HAEASpotlight "Access to medication is a struggle that did not end with my diagnosis. I am continually fighting to mai...
01/26/2020

💡#HAEASpotlight "Access to medication is a struggle that did not end with my diagnosis. I am continually fighting to maintain access to my medication and striving for more. I often feel like I have to prove myself, my diagnosis, and my need for medication. I have had medication for about a year and a half now and it has changed my way of thinking. I used to have to constantly adapt to the needs of my health and worry that I may get sick at any moment, but now I feel like I have a safety net for the first time in my life. Having access to medication has motivated me to continue to fight for the next innovations to have a better life for all of us.” – Sydney (Texas). We're SPOTLIGHTING Sydney's incredible JOURNEY. Follow her STORY on Instagram and Facebook! #HAEASpotlightStephanie #IMAGINEthePossibilities #HAEA20years

📕#NicosLunchbox Did you LOVE Nico's Lunchbox? Now that you have read the first book, we are excited to announce that we ...
01/25/2020

📕#NicosLunchbox Did you LOVE Nico's Lunchbox? 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. Make sure to grab a copy for your family today at: https://bit.ly/353kQo1 #HAEAkids #ImaginethePossibilities

❓Did you know that the HAEA Youth has a PODCAST? January's episode of the #BeyondHAE Podcast series is hosted by Maddie ...
01/25/2020
#BeyondHAE Youth Produced Podcast • A podcast on Anchor

❓Did you know that the HAEA Youth has a PODCAST? January's episode of the #BeyondHAE Podcast series is hosted by Maddie and is now available. Click here to listen to our latest episodes https://anchor.fm/haeayouth. #BeyondHAE #HAE #HereditaryAngioedema

The BeyondHAE Podcast is a series dedicated to serving young people affected by Hereditary Angioedema. Hear from a different host each episode as they share stories of perseverance, activism, and support. We hope that you find strength in listening to stories from HAEA community members. Everyone ha...

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Fairfax, VA
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