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.

Mission: The mission of the US HAEA is to increase awareness of Hereditary Angioedema by providing patients and physicians with reliable and readily accessible information about the disease. We are committed to advancing and conducting clinical research designed to improve the lives of HAE patients and, ultimately, find a cure.

Operating as usual

📸 This month’s #PatientSpotlight is Brianna! Modern Hereditary Angioedema (HAE) therapies have changed Brianna’s life.

“Modern treatment options made my life much easier and more fulfilling. I no longer feel like I have anything "wrong" with me. Actually, some days, I forget I have hereditary angioedema at all.”

Thank you for sharing your story with us Brianna! ❤️

#HAEA #HereditaryAngioedema #HAE #Advocacy #HAEAyouth

🛍️ Have you shopped at the HAEA virtual store yet? It is the perfect way to raise awareness for HAE!

#HAEA #HereditaryAngioedema #HAE #OnlineShopping #Advocacy

🎈 This is the last week to donate to #Families4HAE youth programs! 🎈

Your generous gift will allow us to:
-Send the HAEA children’s book series to local school libraries to raise Hereditary Angioedema (HAE) awareness
-Continue to expand youth advocacy programs to teach young people affected by HAE how to engage with elected representatives, and advocate for themselves and the needs of the HAE community
- Offer scholarships of up to $2,500 twice a year to HAE students in need
Your support makes all this possible! Thank you for your continued efforts to help HAEA youth programming.

Donate to #Families4HAE HERE: https://fundraise.haea.org/FamiliesforHAE2020

#HAEA #HAEAyouth #HereditaryAngioedema #HAE

Has the holiday season left you feeling overwhelmed? The HAEA has a support group for people affected by HAE. All patients, caregivers, and family are welcome!

Contact [email protected] for more information

#HAEA #HeredtiaryAngioedema #HAE #SupportGroup

May the light of the holidays brighten your days and the gift of hope guide your path in the New Year! Love and good health from the HAEA!

#HAEA #HereditaryAngioedema #HAE #HolidaySeason

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HAEA Holiday Tips!

🎁 Listen to these holiday tips from the Patient Advocates at the HAEA. Remember we are always here for you, especially during the holidays!
https://www.youtube.com/watch?v=V9ODd5Gj3M4

#HAEA #HereditaryAngioedema #HAE #Holidays #Advocacy

youtube.com Don’t let stress take away from your celebrations 🎄! Enjoy the holidays stress-free! #HAEAhealth #ImaginethePossibilitiesLess

🎻 #TBT to the HAEA youth campaign #BeyondHAE! We love seeing all the activities our youth members do beyond their HAE.
What does #BeyondHAE mean to you? Comment below!

#HAEA #HAEAyouth #HereditaryAngioedema #HAE #Advocacy

❗ Holiday mental health awareness tip: Take a breather! ❗
Make some time for yourself during the holidays. Find an activity you enjoy or take a break all by yourself. Spending just 15 minutes alone, without distractions, may refresh you enough to handle those holiday tasks! Some options may include taking a walk at night, listening to music, or reading a book.

#HAE #HAEA #HereditaryAngioedema #Wellness

❗ Calling all people affected by Hereditary Angioedema (HAE) and caregivers! With the holiday shipping traffic, it is important to get your prescriptions in on time. Be sure to check the work hours of your specialty pharmacy, and call ahead of time to prevent delays in receiving your medications! ❗

If you have any questions or concerns, please contact your HAEA Patient Advocates through our website, www.haea.org, or by calling us at (866) 798-5598.

#HAE #HAEA #HereditaryAngioedema #Wellness #Holidays

Hereditary Angioedema (HAE) fact of the week!

Angioedema Types: HAE Type I. Those with HAE Type I have low levels of a plasma protein called C1-Inhibitor due to a defective gene on chromosome 11. HAE Type I represents 80-85% of HAE cases. To learn more, please visit: www.haea.org
#HAE #HAEA #HereditaryAngioedema #FactOfTheWeek

Donate to #Families4HAE today to help students like Colin, with Hereditary Angioedema (HAE). Read the impact that the Scholarship Program has had on
Colin’s college experience:
“The HAEA Pam King Scholarship will be a tremendous help for my college experience and benefit my life as a whole. This reduction in my financial obligation will ease my overall stress, allowing me to better focus on my studies. Attending California Baptist University has always been my goal - a step towards my desired career of joining the Los Angeles County Fire Department.”

We are so close to our goal, but we still need your help! Help students like Colin get a college education by donating to #Families4HAE today HERE: https://fundraise.haea.org/FamiliesforHAE2020!
#HAEA #HAEAyouth #HereditaryAngioedema #HAE #Scholarship

Have you ordered your copy of the HAEA Children’s Book Series? 📖 If you order either of the first two books in the series, we’ll send you a second complimentary copy of the same book! Keep the second copy for your family, spread holiday cheer by giving it to a friend, or donate it to a school library. Holiday gift wrap included!
This limited time offer ends December 31st. Order your copy today!
Order here: https://fundraise.haea.org/give/257010/#!/donation/checkout
#HAE #HAEA #HereditaryAngioedema #Holiday

US HAEA Angioedema Center Question of the week!
Is there a recommended emergency protocol patients with Hereditary Angioedema (HAE) should create with their primary physicians?

“Establishing an effective acute treatment plan for managing HAE attacks is the “first rule” of overall HAE treatment. However, there is no specific protocol that can be recommended as each person’s situation is unique. HAE treatment is best individualized so sitting down with your HAE specialist to discuss these details is important. The basic steps to cover include: 1) Selecting an acute medication to treat attacks. 2) Ensuring you have reliable access to that medication – usually this means having the medication in your possession, though occasionally medication will be stored at a treatment site such as a hospital or clinic. 3) Knowing how to administer the medication – this may be self-administration in many cases, but might also involve receiving treatment assistance from your physician, a nurse, or a family member/friend. 4) Knowing exactly where to go in case of any emergency such as an airway attack, difficulty giving the medication, or lack of an adequate response to the medication. This “back-up” plan is important to develop ahead of time. 5) Knowing who to contact if you have questions or need advice about your treatment plan. 6) Knowing how to refill your medications efficiently once they are used to treat an attack.” - Marc Riedl, MD.

To read more, please visit: http://www.angioedemacenter.com/2016/03/is-there-a-recommended-protocol-patients-should-work-with-their-primary-physicians-to-set-up-in-case-of-an-emergency/

#HereditaryAngioedema #HAE #AngioedemaCenter

🚨 Important reminder for people with HAE regarding your medication! 🚨

Follow up with your physician, insurance company, specialty pharmacy, and manufacturer. Ensuring that your personal and treatment information is updated will help with approval of prior authorizations that occur this time of year.

If you have any questions or concerns regarding access to HAE therapies, please contact your HAEA Health advocates through our website, www.haea.org, or by calling us at (866) 798-5598

#HAEA #HereditaryAngioedema #HAE #Advocacy

📸 This month’s HAEA #PatientSpotlight is Brianna! Brianna is a recipient of the HAEA Pam King Scholarship, which awards students with HAE the funds they need to pursue their higher education goals.

“I am so honored to receive the HAEA Pam King Scholarship in pursuit of my academic goals! With this award, I can feel comfortable that my education will not be hindered by financial roadblocks, so I can continue to make great strides in college. With the HAEA Pam King Scholarship, I can afford the necessary books for my classes, and even incorporate the opportunity of studying abroad, which is encouraged for my major in International Studies. Without the HAEA Pam King Scholarship, this would be impossible to undertake”.

We are so proud of your achievements Brianna! We can’t wait to see the amazing things you do in your educational endeavors. ❤️

#HAEA #HereditaryAngioedema #HAE #HAEAyouth #Advocacy

❓ Did you know that the HAEA offers support groups for people affected by Hereditary Angioedema (HAE) and caregivers? These support groups provide an amazing opportunity to talk about your concerns and discover useful tips on managing stress from other HAE patients and caregivers.

Interested in joining one of our support groups? Reach out to Troyce Venturella at [email protected] for more information!
#HAE #HAEA #HereditaryAngioedema #Wellness #SupportGroup

❗ There are only a few days left to DONATE to #Families4HAE! ❗

Your donation will help students with HAE like Emily who tells the HAEA: “This scholarship will give me the opportunity to attain my future academic goals by helping me pay my first semester college tuition expenses. My HAE has made schooling and work difficult, as stress is one of my biggest triggers. This award reduces my stress by alleviating my financial burden”.

Help us support the youngest members of the HAEA community by contributing to the #Families4HAE $25,000 goal here: https://fundraise.haea.org/FamiliesforHAE2020

#HAEA #HAEAyouth #HereditaryAngioedema #HAE #Scholarship

🔴 Hereditary Angioedema (HAE) fact of the week!🔴
HAE stomach attacks can cause severe pain, vomiting, diarrhea, and dehydration. Because the pain of a stomach attack is similar to conditions that require emergency
surgery, many HAE patients have been exposed to unnecessary surgical operations.
For more information, click here: www.haea.org

#HAE #HAEA #HereditaryAngioedema #FactOfTheWeek

❗ #HAEHealth Did you know organizations like Patient Services Inc. (PSI) or the Assistance Fund (TAF) can help pay your copays, insurance premiums, and extra medical costs?
To renew or apply go to:
The Assistance Fund (TAF) - https://tafcares.org/
DEADLINE - December 18
Patient Services Inc. (PSI) -https://www.patientservicesinc.org/
DEADLINE - December 31

For more information or for assistance navigating the process, please contact an HAEA Health Advocate at (866) 798-5598.

#OpenEnrollment #HAE #HereditaryAngioedema

🛍️ There are so many different products to explore on the HAEA virtual store! Show your HAEA pride by sporting one of our many cool items for sale on our website haea.org!

#HAEA #HereditaryAngioedema #HAE

#TBT to the HAEA’s Youth Advocacy Workshop at the HAEA National Summit in Atlanta, GA! The HAEA’s Youth Advocacy Program successfully teaches young people with HAE how to advocate for themselves and the HAE community.

Support the HAEA Youth Advocacy Program by donating to our #Families4HAE fundraiser. Help us reach our $25,000 goal HERE: https://fundraise.haea.org/FamiliesforHAE2020

#HAEA #HAEAyouth #HereditaryAngioedema #HAE #YouthAdvocate #Advocacy

🔴 Join us TONIGHT at 7 PM EST / 4 PM PST for the HAEA Treatment Education Series Webinar: A new oral treatment for the prevention of HAE attacks -sponsored by Biocryst. We look forward to seeing you in this virtual event! 🔴
JOIN the EXCLUSIVE Webinar HERE https://haea.zoom.us/j/97237967537, or by PHONE +1 646 558 8656 (Webinar ID: 972 3796 7537). *This Webinar is intended for United States residents only.

❗ #HAEHealth Did you know organizations like Patient Services Inc. (PSI) or the Assistance Fund (TAF) can help pay your copays, insurance premiums, and extra medical costs? To renew or apply go to:
The Assistance Fund (TAF) - https://tafcares.org/
DEADLINE - December 18
Patient Services Inc. (PSI) -https://www.patientservicesinc.org/
DEADLINE - December 31

For more information or for assistance navigating the process, please contact an HAEA Health Advocate at (866) 798-5598.

#OpenEnrollment #HAE #HereditaryAngioedema

❗ Mental Health awareness tip: Enjoy the moment, relish the times!

Holiday activities can be spread out throughout the season to help lessen stress and increase enjoyment. Avoid doing everything in one day. Whether you’re decorating your home, wrapping gifts, or baking, take time to enjoy each moment and relish the spirit of the holidays!

#HAE #HAEA #HereditaryAngioedema #Wellness #Holidays

🔴 Join us TOMORROW at 7 PM EST / 4 PM PST for the HAEA Treatment Education Series Webinar: A new oral treatment for the prevention of HAE attacks - sponsored by Biocryst. We look forward to seeing you in this virtual event! 🔴
JOIN the EXCLUSIVE Webinar HERE https://haea.zoom.us/j/97237967537, or by PHONE +1 646 558 8656 (Webinar ID: 972 3796 7537). *This Webinar is intended for United States residents only.*

❗ Today is the LAST DAY to Enroll in your plan on the insurance marketplace! ❗ Do your research and identify the best option to ensure healthcare coverage beginning on January 1, 2021.

If you don’t enroll in a plan by December 15th, you will be unable to get 2021 coverage unless you qualify for a Special Enrollment Period.

For more information or for assistance navigating the Open Enrollment process, please contact an HAEA Health Advocate at (866) 798-5598.

🔴 Attention all Hereditary Angioedema (HAE) patients and caregivers from Minneapolis! The HAEA is hosting a virtual Meet and Greet for YOU! Join us TONIGHT at 8:30PM EST.

To attend this event, please register HERE:
https://bit.ly/3na3pLX

#HAE #HAEA #HereditaryAngioedema #MeetAndGreet #RareDisease

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HAEA Scholarships Support Education for our Youth

The Pam King HAEA Scholarship program provides financial support for HAE patients seeking to improve their lives through academic achievement. Watch this special HAEA Webinar Brief featuring one of our Pam King HAEA Scholars, Courtney Olson, who shares her experience with the Scholarship program! 🎓

Watch HERE: https://youtu.be/m2dEjwO8Jug

For more information about the Pam King HAEA Scholarship program, contact Lisa Facciolla at [email protected]

#HAE #HAEA #HereditaryAngioedema #Scholarship

youtube.com We invite you to watch this special HAEA Webinar Brief featuring one of our Pam King HAEA Scholarship Recipients, Courtney Olson, who shares his experience w...

📌 US HAEA Medical Advisory Board Opinion on COVID 19 Vaccination for People with HAE

From US HAEA President & CEO, Tony Castaldo:

“The US HAE Association has received numerous questions from the community asking if there is anything about HAE that would prevent people with the condition from receiving the currently approved COVID-19 vaccine or others that are likely to be approved by the FDA. To address this issue, Dr. Bruce Zuraw, Chair of the US HAEA Medical Advisory Board (MAB), asked each Advisory Board member to express their expert opinion on the issue. The MAB is unanimous in their view that there is no medical or scientific evidence that having HAE should prevent a patient from being vaccinated.

The US HAE Association's health advocacy team recommends that anyone with questions, concerns, severe allergies, or non-HAE health issues consult with their physician before being vaccinated.”

📲 Contact the US HAEA Health Advocacy team here (866) 798-5598!

❗ ONLY ONE DAY LEFT TO ENROLL IN YOUR INSURANCE! ❗ The December 15th deadline for open enrollment is TOMORROW! Do your research and identify the best option for you to ensure healthcare coverage beginning on January 1, 2021.
If you don’t enroll in a plan by December 15th, you will be unable to get 2021 coverage unless you qualify for a Special Enrollment Period.

For more information or for assistance navigating the Open Enrollment process, please contact an HAEA Health Advocate at (866) 798-5598.

🔴 US HAEA Angioedema Center Question of the week! 🔴

If a child (ages 5-10) has tested negative for Hereditary Angioedema (HAE), should they be retested? If so, how long after the first testing?

“It is critical to have children tested for HAE if there is an affected parent. Families can then establish an effective treatment plan to ‘be prepared.’ Laboratory testing for C1INH deficiency is generally quite reliable after 1 year of age, so testing done in this specific case should be accurate. There are certain situations where one might consider repeat testing after normal results if a child is showing symptoms strongly suggestive of HAE, particularly if there is a family history of C1INH deficiency. There are also some specific nuances to C1INH functional testing. One of the assays used may rarely misclassify function as ‘low’ or ‘normal’ – essentially the test is wrong a very small percentage of the time. So for families with Type II HAE (normal C1INH levels but low C1INH function) or when the overall lab result profile (C4, C1INH level, C1INH function) is conflicting, a repeat round of testing may be important. However, these circumstances arise due to issues with the laboratory tests themselves, NOT due to changes in the child’s C1INH protein levels or function. Those C1INH levels are pretty much set and stable by age 1. If retesting is performed, it’s generally advisable to wait a month between tests.” -Sandra Christiansen, MD.

Want to know more about HAE? Please visit www.haea.org!

#HereditaryAngioedema #HAE #AngioedemaCenter

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Videos (show all)

#Families4HAE Fundraiser
Families4HAE
#BeyondHAE Podcast
HAE Speaks Podcast
Noah Podcast
#Familes4HAE Fundraiser!
#BeyondHAE Podcast
HAEA Patient Spotlight
HAE In-Motion
2020 HAEA Virtual Capitol Hill Day
2020 Virtual Capitol Hill Day - Doug
Shop HAEA!

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