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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📣 Learn how to work together with your physicians and caretakers to ensure that you get the best treatment plan possible...
06/08/2021

📣 Learn how to work together with your physicians and caretakers to ensure that you get the best treatment plan possible!

Join us THIS THURSDAY, June 10th at 7:00 PM ET/ 4:00 PM PT for the HAEA Treatment Education Series Webinar: Shared Decision Making. This webinar will feature Dr. Aleena Banerji, MD, and is sponsored by Biocryst.

✅ Register for this virtual webinar HERE: https://fb.me/e/1q1hdOg2Y
#HAE #HAEA #HAEAWebinar #VirtualWebinar

📣 Learn how to work together with your physicians and caretakers to ensure that you get the best treatment plan possible!

Join us THIS THURSDAY, June 10th at 7:00 PM ET/ 4:00 PM PT for the HAEA Treatment Education Series Webinar: Shared Decision Making. This webinar will feature Dr. Aleena Banerji, MD, and is sponsored by Biocryst.

✅ Register for this virtual webinar HERE: https://fb.me/e/1q1hdOg2Y
#HAE #HAEA #HAEAWebinar #VirtualWebinar

⌛ We are LESS THAN TWO WEEKS away from the second LIVE EVENT of the 2021 US HAEA Virtual Summit Series! Get ready to ASK...
06/07/2021

⌛ We are LESS THAN TWO WEEKS away from the second LIVE EVENT of the 2021 US HAEA Virtual Summit Series!

Get ready to ASK THE EXPERTS everything you wanted to know about HAE!

Join us Wednesday, June 16th at 7:00PM EST/ 4:00 PM PST for Ask the Experts with the US HAEA Medical Advisory Board.

✅ Be sure to also check out the exceptional on-demand sessions available NOW on the virtual platform! Register HERE: https://www.haea.org/autoforms/f/147

#HAE #HAEA #HAEASummit #VirtualSummit #NonProfit

⌛ We are LESS THAN TWO WEEKS away from the second LIVE EVENT of the 2021 US HAEA Virtual Summit Series!

Get ready to ASK THE EXPERTS everything you wanted to know about HAE!

Join us Wednesday, June 16th at 7:00PM EST/ 4:00 PM PST for Ask the Experts with the US HAEA Medical Advisory Board.

✅ Be sure to also check out the exceptional on-demand sessions available NOW on the virtual platform! Register HERE: https://www.haea.org/autoforms/f/147

#HAE #HAEA #HAEASummit #VirtualSummit #NonProfit

US HAEA Angioedema Center Question of the week! Can pregnancy influence the frequency and severity of Hereditary Angioed...
06/07/2021

US HAEA Angioedema Center Question of the week!

Can pregnancy influence the frequency and severity of Hereditary Angioedema (HAE) attacks?

“Pregnancy can certainly impact the frequency and severity of HAE attacks. However, the effect is unpredictable as the largest studies in this area have shown mixed results: some women have worsening HAE symptoms during pregnancy, some improve, and some see no significant change. While most women have the same clinical course with each subsequent pregnancy, some women have a significantly different course with each pregnancy. Because of this unpredictability, researchers have investigated factors that might provide some clue to the course in individual women. Such predictors would clearly be helpful in clinical preparation and management. Studies have looked at the issue as to whether a baby with C1INH-deficiency influences the mother’s HAE symptoms during pregnancy. One study showed that this is the case – that a higher frequency of maternal attacks was observed, particularly during the last trimester, if the baby had C1INH deficiency. The other study showed that the mother’s C1INH functional levels were lower if the baby had C1INH deficiency, but did not show an increased frequency of maternal attacks. So again, and this is a recurring theme in HAE, there’s a great deal of variability and it’s tough to make any general conclusions about HAE symptoms in pregnancy.” - Marc Riedl, MD.

For more information, please visit www.angioedemacenter.com or contact an HAE Health Advocate at (866) 798-5598.

#HereditaryAngioedema #HAE #AngioedemaCenter #QuestionOfTheWeek

US HAEA Angioedema Center Question of the week!

Can pregnancy influence the frequency and severity of Hereditary Angioedema (HAE) attacks?

“Pregnancy can certainly impact the frequency and severity of HAE attacks. However, the effect is unpredictable as the largest studies in this area have shown mixed results: some women have worsening HAE symptoms during pregnancy, some improve, and some see no significant change. While most women have the same clinical course with each subsequent pregnancy, some women have a significantly different course with each pregnancy. Because of this unpredictability, researchers have investigated factors that might provide some clue to the course in individual women. Such predictors would clearly be helpful in clinical preparation and management. Studies have looked at the issue as to whether a baby with C1INH-deficiency influences the mother’s HAE symptoms during pregnancy. One study showed that this is the case – that a higher frequency of maternal attacks was observed, particularly during the last trimester, if the baby had C1INH deficiency. The other study showed that the mother’s C1INH functional levels were lower if the baby had C1INH deficiency, but did not show an increased frequency of maternal attacks. So again, and this is a recurring theme in HAE, there’s a great deal of variability and it’s tough to make any general conclusions about HAE symptoms in pregnancy.” - Marc Riedl, MD.

For more information, please visit www.angioedemacenter.com or contact an HAE Health Advocate at (866) 798-5598.

#HereditaryAngioedema #HAE #AngioedemaCenter #QuestionOfTheWeek

06/06/2021
#BeyondHAE Podcast- Ava

📣 Have you listened to Episode 28 of the #BeyondHAE podcast? This episode features youth Hereditary Angioedema (HAE) caregiver, Ava, and her mom, Sherry, who share their experiences caring for, and supporting Ava’s younger sister Lillian, who has HAE, through tough times and the entire timeline of her HAE journey.

Listen to Ava and Sherry’s episode of the #BeyondHAE podcast on Apple Podcasts, Spotify, or by accessing the link HERE: https://anchor.fm/haeayouth

#HAE #HAEA #HereditaryAngioedema #YouthPodcast #Advocacy

Ruconest Safety Registry final weeks – Remember to submit your Attack Event Reports!Thank you to all the valued members ...
06/06/2021

Ruconest Safety Registry final weeks – Remember to submit your Attack Event Reports!

Thank you to all the valued members of the Ruconest Safety Registry! The registry will close in just a few short weeks, and we need your help to ensure we have the safety data needed!

Attack Event Reports provide vital information!

If you are a current Ruconest Safety Registry participant, please ensure that you submit all your Attack Event Reports by Friday, June 11th. This will ensure that we have adequate data to share with the FDA.
For more information, please reach out to Sherry Swanson at [email protected].

Ruconest Safety Registry final weeks – Remember to submit your Attack Event Reports!

Thank you to all the valued members of the Ruconest Safety Registry! The registry will close in just a few short weeks, and we need your help to ensure we have the safety data needed!

Attack Event Reports provide vital information!

If you are a current Ruconest Safety Registry participant, please ensure that you submit all your Attack Event Reports by Friday, June 11th. This will ensure that we have adequate data to share with the FDA.
For more information, please reach out to Sherry Swanson at [email protected].

This year our #PatientSpotlights feature HAEA friends who work in the healthcare field. Thank you to all of the heroes w...
06/05/2021

This year our #PatientSpotlights feature HAEA friends who work in the healthcare field. Thank you to all of the heroes who help those with HAE on a daily basis!

Throughout the month of June, we are spotlighting Kendall. Kendall is a nurse as well as a caregiver for his partner, Lois, who has HAE. This week, Kendall shares why he chose a career in nursing:

“My name is Kendall Park and I am from Central CA. I grew up knowing how much nurses help patients physically and emotionally. My mother retired after over 50 years of nursing and my sister is a nurse, as are 2 of my nieces.”

#HAEA #HereditaryAngioedema #HAE #HealthcareHeroes #Advocacy

This year our #PatientSpotlights feature HAEA friends who work in the healthcare field. Thank you to all of the heroes who help those with HAE on a daily basis!

Throughout the month of June, we are spotlighting Kendall. Kendall is a nurse as well as a caregiver for his partner, Lois, who has HAE. This week, Kendall shares why he chose a career in nursing:

“My name is Kendall Park and I am from Central CA. I grew up knowing how much nurses help patients physically and emotionally. My mother retired after over 50 years of nursing and my sister is a nurse, as are 2 of my nieces.”

#HAEA #HereditaryAngioedema #HAE #HealthcareHeroes #Advocacy

🏃 The first 2021 HAE IN-MOTION® weekly virtual challenge is quickly approaching on June 14th! Be ready to post photos of...
06/05/2021

🏃 The first 2021 HAE IN-MOTION® weekly virtual challenge is quickly approaching on June 14th! Be ready to post photos of you in your HAE IN-MOTION® race gear!

Register for the 2021 HAE IN-MOTION® Virtual Challenge NOW to participate and receive a free HAE IN-MOTION® goodie bag! Each weekly photo challenge winner and a grand prize winner will receive a fabulous prize!

You can start tracking your steps as of June 14th HERE to help us meet our goal of 50,000 miles! https://www.charityfootprints.com/HAEINMOTION2021/
#HAEINMOTION #HAE #HereditaryAngioedema

🏃 The first 2021 HAE IN-MOTION® weekly virtual challenge is quickly approaching on June 14th! Be ready to post photos of you in your HAE IN-MOTION® race gear!

Register for the 2021 HAE IN-MOTION® Virtual Challenge NOW to participate and receive a free HAE IN-MOTION® goodie bag! Each weekly photo challenge winner and a grand prize winner will receive a fabulous prize!

You can start tracking your steps as of June 14th HERE to help us meet our goal of 50,000 miles! https://www.charityfootprints.com/HAEINMOTION2021/
#HAEINMOTION #HAE #HereditaryAngioedema

Thank you to all who have already registered for the 2021 US HAEA Virtual Summit Series. You have been automatically ent...
06/04/2021

Thank you to all who have already registered for the 2021 US HAEA Virtual Summit Series. You have been automatically entered to win a $100 Amazon gift card in our weekly drawing!

This week’s winner is Prisilla C!

Don’t miss your chance to win a $100 Amazon gift card in next week’s drawing! Register TODAY to receive your UNIQUE access code to the 2021 US HAEA Virtual Summit Series events here: https://www.haea.org/autoforms/f/147

Thank you to all who have already registered for the 2021 US HAEA Virtual Summit Series. You have been automatically entered to win a $100 Amazon gift card in our weekly drawing!

This week’s winner is Prisilla C!

Don’t miss your chance to win a $100 Amazon gift card in next week’s drawing! Register TODAY to receive your UNIQUE access code to the 2021 US HAEA Virtual Summit Series events here: https://www.haea.org/autoforms/f/147

❗ Don’t miss the HAE-expert physicians’ discussion on HAE with Normal C1-Inhibitor, and all of the other on-demand sessi...
06/04/2021

❗ Don’t miss the HAE-expert physicians’ discussion on HAE with Normal C1-Inhibitor, and all of the other on-demand sessions available on the HAEA Virtual Summit Series platform!

Register for the 2021 HAEA Virtual Summit Series here: https://www.haea.org/autoforms/f/147

Registrants have access to ALL of the HAEA Virtual Summit Series content on the virtual platform for 30 days after each live event. To receive your unique access link to our virtual platform, please visit: https://virtual.haea.org/user/login/

#HAEA #HAE #HereditaryAngioedema #HAEAVirtualSummitSeries

❗ Don’t miss the HAE-expert physicians’ discussion on HAE with Normal C1-Inhibitor, and all of the other on-demand sessions available on the HAEA Virtual Summit Series platform!

Register for the 2021 HAEA Virtual Summit Series here: https://www.haea.org/autoforms/f/147

Registrants have access to ALL of the HAEA Virtual Summit Series content on the virtual platform for 30 days after each live event. To receive your unique access link to our virtual platform, please visit: https://virtual.haea.org/user/login/

#HAEA #HAE #HereditaryAngioedema #HAEAVirtualSummitSeries

💻 Join us Thursday, June 10th at 7:00 PM ET/ 4:00 PM PT for the HAEA Treatment Education Series Webinar: Shared Decision...
06/03/2021

💻 Join us Thursday, June 10th at 7:00 PM ET/ 4:00 PM PT for the HAEA Treatment Education Series Webinar: Shared Decision Making. This webinar will feature Dr. Aleena Banerji, MD, and is sponsored by Biocryst.

Register for this virtual webinar HERE:
https://fb.me/e/1q1hdOg2Y
#HAE #HAEA #HAEAWebinar #VirtualWebinar

💻 Join us Thursday, June 10th at 7:00 PM ET/ 4:00 PM PT for the HAEA Treatment Education Series Webinar: Shared Decision Making. This webinar will feature Dr. Aleena Banerji, MD, and is sponsored by Biocryst.

Register for this virtual webinar HERE:
https://fb.me/e/1q1hdOg2Y
#HAE #HAEA #HAEAWebinar #VirtualWebinar

🎈 #TBT to the HAEA youth campaign #BeyondHAE! Our youth members loved sharing what it means to live life #BeyondHAE! Wha...
06/03/2021

🎈 #TBT to the HAEA youth campaign #BeyondHAE! Our youth members loved sharing what it means to live life #BeyondHAE!

What does living life #BeyondHAE mean to you?

#HAEA #HereditaryAngioedema #HAE #HAEAyouth #Advocacy

🎈 #TBT to the HAEA youth campaign #BeyondHAE! Our youth members loved sharing what it means to live life #BeyondHAE!

What does living life #BeyondHAE mean to you?

#HAEA #HereditaryAngioedema #HAE #HAEAyouth #Advocacy

✔️ Hereditary Angioedema (HAE) fact of the week! HAE with Normal C1-Inhibitor is characterized by symptoms consistent wi...
06/02/2021

✔️ Hereditary Angioedema (HAE) fact of the week!

HAE with Normal C1-Inhibitor is characterized by symptoms consistent with HAE but with normal C1-Inhibitor lab results.

Research has found mutations in 5 genes that may be associated with HAE Normal C1-Inhibitor: Factor XII, Plasminogen, Angiopoietin-1, Kininogen-1, and Myoferlin.

For more information, please visit www.haea.org
#HAE #HAEA #HereditaryAngioedema #HAEFacts

✔️ Hereditary Angioedema (HAE) fact of the week!

HAE with Normal C1-Inhibitor is characterized by symptoms consistent with HAE but with normal C1-Inhibitor lab results.

Research has found mutations in 5 genes that may be associated with HAE Normal C1-Inhibitor: Factor XII, Plasminogen, Angiopoietin-1, Kininogen-1, and Myoferlin.

For more information, please visit www.haea.org
#HAE #HAEA #HereditaryAngioedema #HAEFacts

📣 Are you interested in learning about the latest in Hereditary Angioedema (HAE)? Register for the 2021 US HAEA Virtual ...
06/02/2021

📣 Are you interested in learning about the latest in Hereditary Angioedema (HAE)?

Register for the 2021 US HAEA Virtual Summit Series to learn about:
-challenges faced by our HAE community,
-exciting ongoing HAE research, and
-special youth programs.

Register HERE to access the live platform and watch the on-demand sessions available now! https://www.haea.org/autoforms/f/147

#HAE #HAEA #HAEASummit #VirtualSummit #NonProfit

📣 Are you interested in learning about the latest in Hereditary Angioedema (HAE)?

Register for the 2021 US HAEA Virtual Summit Series to learn about:
-challenges faced by our HAE community,
-exciting ongoing HAE research, and
-special youth programs.

Register HERE to access the live platform and watch the on-demand sessions available now! https://www.haea.org/autoforms/f/147

#HAE #HAEA #HAEASummit #VirtualSummit #NonProfit

Events - Chronic Disease Awareness Day
06/02/2021
Events - Chronic Disease Awareness Day

Events - Chronic Disease Awareness Day

Mark your calendars for upcoming webinars and tips on how to better support yourself and your loved ones living with Chronic Disease.

The HAEA is pleased to recognize dedicated HAEA Healthcare Hero John Anderson, MD! ⚕️ ❤️ “My son was diagnosed with Here...
06/01/2021

The HAEA is pleased to recognize dedicated HAEA Healthcare Hero John Anderson, MD! ⚕️ ❤️

“My son was diagnosed with Hereditary Angioedema (HAE) at 8 years old. He is now 30 years old. In 2017 my son and I had the privilege of attending an HAEA meet and greet in our home town, Dothan, Al, featuring Dr. Anderson. After his presentation, he took time to speak with us one on one. The more we discussed HAE, I could see hope in my son’s eyes. His daughter, Letty, was diagnosed with HAE at 9 months old. She will turn 4 in July. My son knew right away that Dr. Anderson would be her HAE Specialist. His office is 3 1/2 hours away. They have worked with us when scheduling her appointments. Dr. Anderson and his staff are so caring and knowledgeable. He is so good with Letty. She talks about him when she plays with her Dr. kit. Through every swell, to ER visits he and Diane Paige have been there for us. They are always a phone call away. Dr. Anderson and his staff fought her insurance company and got her approved for a preventative medication. We are so grateful for the HAEA and amazing doctors like Dr. Anderson!” - Lisa

A sincere thank you for your dedicated service to the HAE community!

Nominate your HAEA healthcare hero today! Those who are nominated will receive a personalized award to thank them for their dedicated service to the HAE community!

Nominate your HAEA Healthcare Hero HERE: https://www.haea.org/autoforms/f/148
For more information, please contact HAE Advocate, John Williamson, at [email protected].
#HAEAHealthcareHeroes #HAE #HereditaryAngioedema #HAEA

The HAEA is pleased to recognize dedicated HAEA Healthcare Hero John Anderson, MD! ⚕️ ❤️

“My son was diagnosed with Hereditary Angioedema (HAE) at 8 years old. He is now 30 years old. In 2017 my son and I had the privilege of attending an HAEA meet and greet in our home town, Dothan, Al, featuring Dr. Anderson. After his presentation, he took time to speak with us one on one. The more we discussed HAE, I could see hope in my son’s eyes. His daughter, Letty, was diagnosed with HAE at 9 months old. She will turn 4 in July. My son knew right away that Dr. Anderson would be her HAE Specialist. His office is 3 1/2 hours away. They have worked with us when scheduling her appointments. Dr. Anderson and his staff are so caring and knowledgeable. He is so good with Letty. She talks about him when she plays with her Dr. kit. Through every swell, to ER visits he and Diane Paige have been there for us. They are always a phone call away. Dr. Anderson and his staff fought her insurance company and got her approved for a preventative medication. We are so grateful for the HAEA and amazing doctors like Dr. Anderson!” - Lisa

A sincere thank you for your dedicated service to the HAE community!

Nominate your HAEA healthcare hero today! Those who are nominated will receive a personalized award to thank them for their dedicated service to the HAE community!

Nominate your HAEA Healthcare Hero HERE: https://www.haea.org/autoforms/f/148
For more information, please contact HAE Advocate, John Williamson, at [email protected].
#HAEAHealthcareHeroes #HAE #HereditaryAngioedema #HAEA

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