You don't have to go it alone. A virtual support group can help by bringing together members of the HAE family facing similar issues. Whether you are an HAE patient or caregiver, you may find comfort in others outside your immediate circle for support by making meaningful connections in a warm and compassionate forum.
Everyone is welcome to join our HAEA virtual support groups. Contact us if you need help with the following:
We are here for you!
For more information, please contact Troyce Venturella at firstname.lastname@example.org, or (866) 798-5598
We are pleased to welcome Amanda “Mandy” Granat to the HAEA Health Team. You may know Mandy as Luke's mom. Luke has been a very active and enthusiastic member of our Youth Leadership Council, and Mandy has served as an HAEA Hero mom at different events. Mandy is a registered nurse with over 25 years of experience in healthcare, and has a Master of Jurisprudence in Health Law. At a time when all hands are on-deck, Mandy joins our extraordinary Health Team in supporting the growing needs of the HAE community.
For assistance with your HAE questions or needs, you may contact Mandy at email@example.com or any of our HAEA Patient Advocates at 866-798-5598.
Enjoying the sunny, warmer weather can be fun, and as some of you slowly start venturing outdoors, here are a few tips to stay safe in the sun.
US HAEA Angioedema Center Do you need an HAE expert opinion?
The physicians at the US HAEA Angioedema Center at UCSD are a great resource for you and your local healthcare team to get the diagnosis and treatment plan that works best for you.
If you are interested in traveling to the US HAEA Angioedema Center but need travel assistance through the Chris Whalen HAEA Compassion Fund, please contact our health advocates.
Reach out to the US HAEA Health Advocates at 866-798-5598. Whether you need assistance with: insurance issues, finding an HAE expert physician, need to update your member information, want to join a virtual support group , or just have an HAE related question to ask, HAEA Patient Health Advocates are here for you!
The US HAEA will once again participate in the 2020 Chronic Disease Day efforts. Due to the ongoing public health risk posed by COVID-19, the 2020 Chronic Disease Day Capitol Hill Advocacy Day scheduled for July 10th has been adapted to a virtual format. The safety and wellness of patients affected by chronic illness is extremely important to us, and we can still effectively make our voice heard with policy makers on Capitol Hill.
About Chronic Disease Day
Chronic diseases account for 7 of the top 10 causes of death in America and more than 90 percent of our annual healthcare spending. Hundreds of thousands of Americans who suffer from unpreventable chronic conditions need access to care.
Chronic Disease Day is an opportunity for legislators to commit to address issues that affect the entire chronic disease community. These issues include securing funds for medical research and public health programs, and advancing legislation that enhances a patient’s access to the care they need. While July 10th is an occasion to reflect on recent progress and opportunities for further advancement, we will also call on the HAE community to take action to alert your members of Congress of pressing issues, and to use your stories and collective voice to advocate on behalf of legislation that has an impact on the chronic disease community.
What Can You Do?
HAE patients and caregivers are invited to participate in two special Advocacy Training Webinars, and will be provided with Action Letters you can send to your local legislators. Participants will be asked to conduct their advocacy efforts throughout the months of July and August.
To participate in this year’s Chronic Disease Day, please register here, and indicate whether you would like to participate in the educational webinar at 12 PM EDT, the advocacy training webinar at 2:00 PM EDT, or would like to participate in both webinars. John will share a special event link you can access on July 10th.
If you are interested in participating in Chronic Disease Day efforts, or to join the HAEA’s grassroots advocacy efforts, please contact John Williamson at firstname.lastname@example.org.
The US HAEA Member ID card has been updated, and is a valuable tool that ensures important information about your health and HAE needs are readily available in case of an emergency.
US HAEA Member ID cards are available free for all of your HAE-affected family members. They include information on your prescribed medication, contact information for your treating physician, and your family emergency contact.
To receive your US HAEA Member ID card in the mail, simply fill out the online form for your card, and for each additional member of your family. Please note that not all of the information collected in the form will appear on your card.
We invite you to listen to our latest episode of HAE Speaks, a podcast series on important HAE topics. Our latest episode features HAEA President, Tony Castaldo, who offers an overview of HAE therapies on the horizon.
You can also download previous episodes and listen to patients, caregivers, and medical professionals discuss strategies to manage stress, prepare for a visit with your HAE specialist, care for a loved one with HAE, what to expect when you are newly diagnosed, the road to treatment, and much more. Listen today on your favorite platform!
Episode 4: US HAEA President Tony Castaldo provides an overview of HAE therapies under development.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to email@example.com.
You can help patients avoid years of needless suffering. A picture of HAE swelling is the best way to alert physicians to test for the possibility of HAE.
Do you have photos of yourself during an HAE attack? The HAE maintains a library of images that illustrate swelling attacks. The photos are part of the educational materials we provide to physicians and other medical professionals.
Please send your high-resolution photos to firstname.lastname@example.org. Then, click on the link below to complete the consent form, allowing us to use your photos for HAE education.
This summer, we’re excited to introduce a series of fun and interactive HAE activities for your kids to enjoy while also learning about HAE. The activities are divided into three sections: 1) Brady Club Learning, 2) Brady Club Vocabulary, and 3) Nico’s Lunchbox Activities.
The programs are designed to help ease the burden on parents when explaining HAE to their young ones.
To access the activities, simply register or log-in to the Brady Club Website and click on Fun Activities and Nico’s Lunchbox Activities in the dropdown menu.
Congratulations to the Fall 2020 Pam King HAEA Scholarship recipients! Ashna is one of the many incredible students with an HAE diagnosis who received a scholarship award this year.
“It is an honor to be a recipient of this scholarship. My family and I are beyond grateful for the contribution from HAEA. This scholarship will help me achieve my goals and lower the financial burden of college fees. I am going to be studying at the University of Western Ontario in the medical sciences program. In the future, I am hoping to become a pediatrician and give children the same support I had from doctors as well as from the HAEA. I am excited to see what the future holds for me and I am so thankful for this scholarship.” - Ashna
Applications for the Spring 2021 semester open August 1.
We would like to extend a huge thank you to all the incredible kids who participated in the #BeyondHAE coloring contest.
We asked children in our community to create a picture that illustrates their vision of life #BeyondHAE, and their creativity soared! Here’s a glimpse of some of the beautiful submissions that we received.
Congratulations to our contest winners whose art will be featured in the Fall edition of the Brady Club Activity Book!
We are excited to announce the release of two new episodes of the #BeyondHAE podcast. Discover how young people affected by HAE are managing their diagnosis and find comfort in knowing that you are not alone.
Episode 11 of the #BeyondHAE podcast is hosted by 16 year old Sophia, from Connecticut. The episode is all about Sophia’s road to independence and control over her HAE attacks. She talks about how self-administration has increased her confidence, and how finding the right medication has impacted her HAE story.
Episode 12 is hosted by 18 year old Kyleigh, from Texas. Kyleigh’s episode is all about travel tips. Although many of us might not be traveling at this time, it’s important to be prepared when you leave home for any amount of time. Tune into Kyleigh’s episode to learn more about how you can prepare if you must travel.
Every month throughout 2020, we will spotlight a different patient and their unique HAE story. This month we are spotlighting Kemmi. We hope you enjoy the following story during the month of July.
"My name is Kemmi. I live in Missouri. Living with HAE means that I am a living laboratory, working alongside doctors to learn more about this disease.
My first throat attack was in 1991, at 22 years old. I was pregnant with my first daughter. I was diagnosed in 2018, when I was 48 years old. Prior to that, I was treated like I had allergies and anxiety. I was hospitalized many times and prescribed antidepressants.
Having access to HAE medication has changed EVERYTHING. I have an excellent quality of life and I don’t live in fear of attacks."
Message from BioCryst
APeX-S, a study of an investigational oral medication for preventing HAE attacks in patients 12 and older, has over 40 active trial sites across the US with more sites continually coming on board, including new ones in Colorado and Arkansas. Despite COVID-19 complications, APeX-S trial sites are committed to continue study activities safely, including the provision of study medication and taking on new patients!
Message from Takeda
Takeda lifted the COVID-19 screening hold for the SHP643-303 BMA Study on June 24, 2020, and is now recruiting for the clinical trial. Though the Takeda hold is lifted, individual sites will comply with state and local guidelines and safety protocols for bringing patients into clinics. For more information on the clinical trial, please contact the HAEA.
If you have HAE type 1 or 2, HAE with Normal C1 or AAE, 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.
Plan a fun night to meet other HAE members of your community! The HAEA Virtual Meet and Greet Events are a perfect way to reach out and meet with fellow HAE families. Last month, we held fun events for the communities in the Northwest as well as the Nashville, TN areas. Next up, we are hosting events for the New England & Florida communities. If you are interested in participating in an HAEA Virtual Meet and Greet and connect with people from your area, please check out the HAEA Events Calendar, or reach out to Mike Mallory at firstname.lastname@example.org.
“Everyone was kind and inviting. We very much found it worth our time attending and LOVED putting faces, voices, and names together.” Sheena
Through these events, you and your family members or caregiver can:
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
HAEA Virtual Meet & Greet Florida - Wednesday, July 15, 2020 at 6:00 PM EDT
Beautiful Beaches! Add your favorite beach photo to your meeting background.
HAEA Virtual Meet & Greet Southern California - Tuesday, July 28, 2020 at 6:00 PM PDT
Scenic Background! Add your favorite scenic background photo to your meeting background.
HAEA Virtual Meet & Greet Texas - Wednesday, August 12, 2020 at 6:00 PM CDT
Hat day! Wear your favorite hat to the meeting
Participants will receive an HAEA Goodie bag after the event!
For more information, please contact HAEA Patient Advocate, Mike Mallory at email@example.com or (513) 858-9370.
Link Webinar: https://haea.zoom.us/j/98946590261
Phone Number: +1 646 558 8656 (Webinar ID: 989 4659 0261)
One of the most important ingredients to a successful school year is an effective partnership between the student, parents, and the school. Working with your child's school is critical to ensuring that everyone is on the same page and knows what to do when there are unplanned absences or an HAE attack at school. Our guest speaker, Lisa Layera is a mother and advocate for her three children who all have HAE. She will be sharing some of the lessons that she has learned over the years to foster a meaningful and fruitful partnership with her children’s school.
Link Webinar: https://haea.zoom.us/j/98802319885
Phone Number: +1 646 558 8656 (Webinar ID: 988 0231 9885)
It is important for kids and teenagers with HAE to be able to communicate to others when they feel an attack coming. This does not come naturally to most children and often takes time and practice. This Youth Edition Webinar will focus on providing encouraging tips to kids and teens to feel comfortable being assertive about their needs.
Link Webinar: https://haea.zoom.us/j/93711778173
Phone Number: +1 646 558 8656 (Webinar ID: 937 1177 8173)
Are your kids signed up for the Brady Club? Brady Club members are automatically signed up to receive quarterly activity books that are mailed directly to them. The Summer 2020 Brady Club Activity Book will be mailed out by the end of July!
Sign up today to get your activity book in the mail and as a bonus your child will receive a collectible Brady Club sticker!