The next event of the 2021 US HAEA Virtual Summit Series is on Wednesday, July 14th, so be sure to save the date!
The 2021 US HAEA Virtual Summit Series is in full swing! Tune in on Wednesday, July 14th for the exciting session featuring HAE expert, Dr. Marc Riedl, who will provide an overview of modern HAE therapies and discuss medicines currently in clinical trials. In addition, Dr. Raffi Tachdjian will share key advances in HAE pediatric care. This live program will also include a Question and Answer session.
Wednesday, July 14, 2021
7:00 PM ET - Currently Available HAE Therapies and Those on the Horizon
7:00 PM - 8:30 PM Currently Available HAE Therapies and Those on the Horizon Dr. Marc Riedl explains the differences among modern HAE therapies and clinical trials underway, while Dr. Raffi Tachdjian shares key advances in HAE pediatric care.
8:30 PM - 9:00 PM LIVE Breakout Session Q&A with the doctors
On Demand Streaming Programs:
All times are listed in Eastern Time
In Case You Missed the June 16, 2021 HAEA Virtual Summit Session it is Now Streaming On-Demand
Log back into the Summit Portal for an opportunity to win incredible prizes!
The last HAEA Virtual Summit Session was a great success with over 1,000 HAEA friends tuning in! The good news is that the live session was recorded and is available for anyone who was unable to join us or would like to watch again.
In addition, there are a variety of highly relevant programs available for on-demand streaming. See the list below.
Here’s an exciting opportunity!
Signing into the Summit Portal makes you eligible to win great prizes like a Bose Speaker, Google Home Mini, or Amazon Echo. The winner of these prizes will be announced during our next live event on July 14th. Anyone who participates by earning points on the leaderboard will automatically be entered into a raffle for a $500 Amazon gift card! This promotion will last until the end of the HAEA Virtual Summit Series on August 18th.
Points will be earned every time you log onto the platform with the most being obtained by:
Points are also earned by:
Check how many points you have earned by viewing your profile.
Programs available for on-demand streaming:
Virtual Sessions will be available to all registrants for 30 days after the original event date.
The HAEA initiated a ground breaking study that looks to redefine how HAE affects the lives of people afflicted with Hereditary Angioedema. The questionnaires currently used to measure Quality of Life do not capture the full impact of how HAE affects people with the condition.
Our research objective is to design a more comprehensive Quality of Life tool that will result in a more accurate measure of the HAE burden of illness and the value of HAE therapies.
The questionnaires currently used to measure Quality of Life do not capture the full impact of how HAE affects people with the condition.
Be on the lookout for an email in mid-July which will provide you with a link to participate in this exciting and unique HAEA-initiated study.
It is essential that all HAE friends participate in this cutting-edge project which could expand and revolutionize how the medical community and insurers understand how HAE affects Quality of Life.
We invite you to be part of the 2021 HAE IN-MOTION® Virtual Challenge to raise awareness and funds for HAE. The six-week event is a virtual walk, run, or ride that allows you to log your steps directly on our site and share your activities!
Help us reach our target of 50,000 miles by July 31, 2021 and raise funds to help support key programs that directly benefit people with HAE including: College Scholarships; Financial assistance for those who otherwise could not afford travelling to see an HAE specialist; and research to improve quality of life.
Join our weekly photo-based challenges to compete for awards!
Participate in our weekly photo challenges for a chance to win prizes! Each week, a photo challenge will be posted. The winner will be selected by our elite panel of judges. Each weekly photo challenge winner and a grand prize winner will receive a fabulous prize! Remember to add these hashtags when posting so we can sort your photos:
Week Four: Pets 7/05-7/12 #HAEINMOTIONpets Post a picture of your pet and you could win a prize! *Photo must be posted by midnight 7/12 to be eligible!
Week Five: Trails 7/12-7/19 #HAEINMOTIONtrails Show us a photo of your favorite trail for your chance to win! *Photo must be posted by midnight 7/19 to be eligible!
Week Six: Family 7/19-7/31 #HAEINMOTIONfamily Submit a great family photo for your chance to win! *Photo must be posted by midnight 7/31 to be eligible!
Please share the CME with your physicians, nurses, or pharmacists for an opportunity to earn free continuing medical education credits, provide an educational opportunity, and spread awareness on HAE and current treatment guidelines.
To access the CME program, please visit www.haea.org and go to Resources / For Professionals.
“The unpredictability of HAE is a major driver of stress and anxiety. The advice I give is to be sure to have a good management plan, review that management plan regularly, and be confident that it will be successful. For an acute treatment, know where your medication is, how to use it, and how long it will take to work. While this doesn’t eliminate unpredictability, it could make one less anxious and give a sense of control in knowing how to handle an HAE attack when it happens. Prophylactic treatment is an option for patients who wish to try to reduce the frequency and/or severity of HAE attacks by taking medication on a regular schedule. Taking long-term prophylaxis is an individual choice that each patient needs to discuss with their specialist. A potential advantage is that it lends more predictability to life. A majority of patients are able to lessen the number and severity of attacks, so those unpredictable events become fewer and they are able to reduce the stress and anxiety associated with the unpredictability of HAE.” - Marc Riedl, MD.
For more information, please visit www.angioedemacenter.com
The HAEA Health Team is always here for you! Please reach out to us at 866-798-5598 for assistance with: 1) insurance issues, 2) finding an HAE expert physician, 3) updating your member information, 4) joining a virtual support group, or 5) an HAE-related question.
Now that kids are out of school and the warm weather is upon us, many individuals and families are starting to make their summer plans! Whether it is finally being able to go to an outdoor concert, travel to see family, or booking a family trip to Disney World - it is important to PLAN AHEAD. Life is busy! Oftentimes, we get busy planning everything else that we forget important things, such as keeping up to date with Prior Authorizations.
Prior authorizations (PAs) are important and do expire! Keeping up to date with your PA’s will help avoid unnecessary delays in getting your medication on time and avoid having to go through the entire process all over again. Some insurances are requiring them to be renewed every 6 months now, so set a reminder for yourself as well as communicate with your physician’s office.
Whether you are old school and like a paper calendar, or tech savvy and have reminders on your mobile device - please make sure to set your reminders for prior authorization renewals as well as monthly medication reorders. Remember to stay organized!
The HAEA Healthcare Heroes Recognition Program offers an opportunity for our community to acknowledge healthcare professionals who go out of their way to provide us with an extraordinary level of kind and compassionate care.
Based on a nomination submitted by Lisa Campesi, the HAEA is pleased to recognize Diane Paige, CCRC. Lisa's powerful description of Diane's commitment reflects the impact of a true HAEA Healthcare Hero.
“Diane Paige is our savior when it comes to having a Hereditary Angioedema (HAE) diagnosis. When we had a problem at an ER visit, Diane called and things were handled appropriately. Our ER staff knows our granddaughter, Letty, and when we call to let them know we are on the way, they are ready and waiting for her. Thanks to Diane things are much smoother when we have to go to the ER. We can always call Diane at any time. She gives us peace of mind and is always so helpful with my granddaughter.”
US HAEA Healthcare Heroes will be recognized on our social media platforms and will receive an award for their office or desk as well as a certificate of appreciation.
If your HAE physician or healthcare professional has provided you and/or your family with an exceptionally high level of care, please consider submitting their name in nomination for an HAEA Healthcare Hero Award.
For more information, please contact HAE Advocate, John Williamson, at email@example.com.
We invite you to download and listen to HAE Speaks, a podcast exclusively created for the HAEA community. The podcast series showcases the stories of individuals affected by HAE with the goal of connecting our community through shared experiences. We invite you to add HAE Speaks to your podcast playlist and listen on all major podcasting platforms!
Episode 15: Lisa talks about the HAE IN-MOTION® event that she and her family participate in by enjoying walks together as a family and entering in the weekly photo contest. Also, Lisa talks about promoting the event on Facebook.
Do you have a topic, question, or idea you would like us to cover? Send your suggestions to Mike Mallory at firstname.lastname@example.org.
The Summer 2021 Activity Books are here! If your child is 12 or under, and doesn’t receive the Brady Club Activity Book, it’s time to sign them up for the club! Registration is FREE and members get tons of perks that include access to an exclusive online learning platform, invitations to special HAEA youth events, a birthday surprise, collectible stickers, and quarterly activity books mailed out directly to them! Join TODAY!
This month we’re providing you with a free downloadable coloring page that your kids can enjoy at home. Download and print the FREE Brady Club coloring page!
In Nico’s Story, Nico cannot wait to get on the plane and head to Washington, D.C. He and his family will join other HAE advocates for Capitol Hill Day. Nico is excited to visit Congress and talk about what it’s like to have HAE. Best of all, he will get to see his good friends, Jay and Kai. He has not seen them since the surprise visit at the lake house last summer. Will Nico make new friends at Capitol Hill Day? What will he discover when he explores the nation’s capital?
BONUS! With every book ordered, we’ll include a FREE 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 Lisa Facciolla at email@example.com.
The #BeyondHAE Youth Podcast series is a podcast produced BY young people with HAE FOR young people with HAE. Listen to stories from young people affected by HAE as they share the ways that they navigate life with HAE or support a diagnosed family member.
Episode 29 is hosted by Ally, whose younger brother, Jack, has HAE. In this episode, Ally talks about how her family supports Jack and his HAE by coming together to host fun events and activities.
Takeda is now recruiting people with HAE with Normal C1-Inhibitor for their clinical trial. Individual sites will comply with state and local guidelines and safety protocols for bringing individuals into clinics.There are now 14 clinical trial sites actively enrolling, including new sites in Tampa, FL and Chicago, IL.
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 firstname.lastname@example.org to see if there will be an active clinical trial site in your area.
Network with other HAEA members from your community! The HAEA Virtual Meet & Greet Events are a perfect way to reach out and get to know 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 email@example.com.
Ariella B. who participated in a recent Virtual Meet & Greet said:
“You really feel a part of a community and as a team anything is possible” -- Ariella B.
UPCOMING HAEA VIRTUAL MEET & GREET EVENTS
Tuesday, July 20th, 6:30 PM ET
Tuesday, August 8th, 6:30 PM CT
Register today to receive a FREE HAEA swag bag after the event!
For more information, please contact Mike Mallory at firstname.lastname@example.org or (513) 858-9370.
Link Webinar: https://haea.zoom.us/j/96195610844
Phone Number: +1 646 558 8656 (Webinar ID: 961 9561 0844)