From Ianice Viel, Patient Advocate/Social Media Manager, US HAEA

COVID-19 webinars and Webinar Briefs: In light of the COVID-19 pandemic, the US HAEA has been offering a series of webinars presenting information on the latest developments on COVID-19. The webinars focus on potential health risks presented by the coronavirus to HAE patients, regulatory and legislative changes that may impact access to treatments, and how to manage stress while staying at home. All webinars are offered by professionals who understand HAE. These are the webinars available to date:

  • COVID-19 and HAE, with Dr. Marc Riedl, Clinical Director at the US HAEA Angioedema Center at University of California San Diego
  • COVID-19 and Staying Mentally Healthy, with Troyce Venturella, MPH, RN, CCM
  • COVID-19 and HAE Update, with Dr. Marc Riedl, Clinical Director at the US HAEA Angioedema Center at University of California San Diego
  • Legislative and Regulatory Changes in times of COVID-19, with John Williamson and Dane Christiansen, Health and Medicine Counsel (HMCW)

All webinars are available to watch through the US HAEA website. For those who just want to catch key points discussed at these webinars, we are also showcasing webinar briefs, which provide answers and key information in a short format.

Virtual Youth Advocacy Program: The HAEA Youth Advocacy Program encourages young people to be active in shaping the perspectives of elected representatives in Congress. By participating in legislative advocacy initiatives, our HAEA Youth use their collective voices to ensure that issues important to them and the entire community are heard by our elected officials.

The US HAEA is offering an innovative, virtual legislative training program that prepares HAE youth between the ages of 12 and 25 to advocate for additional research and improved HAE treatments and access. The Youth Legislative Training program consists of six online lessons that guide young advocates through the process of identifying key policymakers, legislative priorities for the HAE community and culminate with coaching on drafting and delivering an elevator pitch for visits with lawmakers. The goals of the Youth Advocacy Program include:

  • Empowering young people to become HAE advocates, so their perspectives are well represented in public policy that affects the HAE community, and
  • Instilling confidence in the next generation of HAE community leaders

Participants will receive a US HAEA Youth Advocacy Certification upon completion of all activities.

Stepping Forward Together Virtual Walk: Many members of the U.S. HAE community celebrated hae day :-) during the month of May by joining the Stepping Forward Together Virtual Walk. Steps accumulated by the US HAEA Community were also included in the 2020 HAE Global Walk.

HAEA Health Team lends a helping hand: The HAEA Health Team is ready to support patients and families as they manage their HAE. Health Advocates offer kind and compassionate support to guide patients through diagnosis, offer physician referrals, and provide assistance with insurance denials and reimbursements.

Obtaining a correct diagnosis and having an optimal HAE treatment plan are the cornerstones of a better life. We have built a nationwide network of knowledgeable physicians who know how to diagnose and treat HAE. Our Health team provides referrals to these physicians and can also arrange appointments with highly skilled angioedema specialists.

In uncertain times such as these, the HAEA Health Team stands ready to lend an ear and provide support as members face new challenges posed by the COVID-19 pandemic. To this end, we have expanded opportunities to connect with others through our virtual support groups. The HAEA Virtual Support group provides a warm and caring environment conducive to supportive, compassionate discussions, and problem solving and is open to patients and caregivers.

The Health Team continues to engage and introduce a basic understanding of HAE to medical professionals. Our efforts to expand our network of HAE medical professionals is ongoing and we will keep on offering Continuing Medical Education courses to meet this goal. These courses are available through our special portal at haeedu.com.

Access to therapies through Charitable Assistance Programs: The US HAEA leads the United for Charitable Assistance Coalition and is working hard to ensure patients and families living with chronic conditions can afford their prescribed medicines. Access to charitable assistance programs is now more important than ever as the economic impact of the COVID-19 crisis puts additional pressure on patients and their families. With this in mind, the United for Charitable Assistance Coalition sent letters to Congress urging them to protect vulnerable patients and reject policies that would jeopardize the availability of charitable assistance. The US HAEA is committed to advocating for an uninterrupted access to life-saving therapies for members of our patient community.

Podcasts give HAE community a voice: In our continued outreach to the community we heard many requests for more opportunities to share the HAE journey. In response to our members’ input, we are pleased to announce the launch of a new podcast series: HAEA Speaks. This podcast series are geared to a wider audience and cover important HAE topics and information offered by medical professionals, patients, and caretakers. Topics include 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. The first episode of HAEA Speaks is hosted by Missy, who talks about being a caregiver to her husband, Mike, and daughter Abby.

Anyone interested can listen to the HAEA Speaks podcasts on their favorite platform or through anchor.fm/haespeaks or anchor.fm/haeayouth.

Brady Club offers fun, educational material for: The Brady Club is an online, safe space just for children, ages 4-12, diagnosed with HAE and their siblings. The Brady Club gives children a place to share their experiences and learn to better understand and cope with HAE. Brady Club members receive quarterly activity books with fun and informative hands-on activities. This summer’s Brady Club Activity Book motivates kids to enjoy bright and sunny summer days through outdoor activities with parents, caretakers, and siblings. The activity book also includes information on HAE and simple lessons for kids to learn about HAE and its causes. It is available in English and Spanish.

Together Apart: Members of our US HAE youth community are connecting with fellow HAE patients from other countries by participating in the HAEi Youngsters Community’s #TogetherApart Project. Kids and young adults between the ages of 12 and 25, are sharing their stories, photos, and words of wisdom to bring the global HAE community together. The Together Apart project brings our community together and focuses on those things that unite us. It also reflects the diversity of other cultures that expands understanding and enriches our worldviews. We are proud to take part in this campaign and look forward to extending our experiences and helping hands beyond borders.

#BeyondHAE Challenge brings the HAE Youth together: The US HAEA aspires to support the HAE Youth by offering spaces to share their lives even as they spend an increasing amount of time at home and practice social distancing in light of COVID-19. Participants are challenged to share photos and/or videos that showcase aspects of their daily lives beyond HAE. Whether they like binge-watching on a good TV show, drawing, or exercising at home, sharing their favorite activities to pass the time helps to raise their spirits and makes them feel connected to others across the country.