HAEA in Action March 2020 Newsletter Tony J. Castaldo

A Message from Tony J. Castaldo

The HAEA community is unique and well regarded in the patient advocacy world because we have banded together to accomplish something unprecedented for an ultra-rare condition. Our collective efforts to create a unified patient group, find and nurture HAE expert physicians, and willingness to participate in clinical trials yielded 7 FDA approved HAE treatments in 10 years. What's more, number 8 is expected to receive FDA approval later this year, and no less than 5 companies are actively pursuing innovative approaches to HAE treatments that include gene therapy.

Everyone who is part of our HAEA family should rightly be proud of what has been accomplished. Nevertheless, the recent surveys and focus groups we conducted to understand our community's needs in 2020 revealed that in many ways our work has just begun! Based on your invaluable feedback, the HAEA is
As people and caregivers who also suffer from HAE, we look upon every day as an opportunity to help members of our community thrive throughout all stages of their lives. Our forward-looking and continuous effort to better serve you also prompted us to revisit HAEA's mission, vision, and values, which are provided below. It is clear that together we are an unstoppable force!

Warmest regards to all HAEA friends,
Tony J. Castaldo

OUR MISSION: To lead a nationwide advocacy movement that focuses on increasing HAE awareness and education, empowering patient access to suitable treatment, and fostering ground-breaking research that includes searching for a cure.

OUR VISION: Unrestricted access to therapy so people affected by HAE are unburdened by symptoms and able to experience life to the fullest.

OUR VALUES: To fulfill our community's highest priority needs with innovative programs, services, and activities that are delivered with an extraordinary level of empathy, kindness, and compassion.


Help Us Countdown to Hae Day :-) and Spread Hae Awareness In Your Community by Hosting Your Own HAE Event!

We're counting down to hae day :-) on May 16 with our #HowtoHAE campaign! Let's use this global platform to make our collective voices heard in support of HAE research.

We want YOU to join the HAEA in commemorating this special day and participate in our #HowtoHAE (Host An Event) campaign! This campaign will run from Rare Disease Day until hae day :-), and it's really simple to get involved! Let's start by answering the two most important questions you may have about joining this special campaign - HOW? and WHY?

HOW Should I Get Involved?

Not sure #HowtoHAE (Host An Event)? Don't worry! We have a very easy to follow step-by-step guide that will help you host a successful event.
  1. First, you're going to want to create your own event. This will give you a platform to share your event with your friends, family, and co-workers and collect money for HAE research!

  2. Next, take a look at our Fundraising Guide for successful fundraising tips and tricks on how to spread the word and promote your campaign.

WHY Should I Get Involved?

There are numerous reasons for getting involved, starting with supporting people in your own family affected by HAE. But here are some more reasons that may motivate you when planning to join our #HowtoHAE (Host An Event) campaign.
  1. Support HAE Research! HAEA’s ultimate goal is to find a CURE for HAE. All funds raised from the #HowtoHAE campaign will go to HAE research.

  2. Raise awareness! HAE takes, on average, over a decade to receive a proper diagnosis due to a lack of education and awareness. Hosting An Event will help raise awareness about HAE in your area so we can close that gap.

  3. Give back! When you speak, we listen! Many of you have expressed your desire to give back so future generations of HAE patients will not have to suffer the way you have. Here is your chance to make a difference!

We want to see you succeed! For more information on the campaign, or if you have any questions on how to get started, please reach out to HAEA Patient Advocate Mike Mallory at mikemallory@haea.org.

Upcoming events: March 14th: Union, New Jersey
Team Jack will be representing the HAEA in the Union, New Jersey St. Patrick's Day parade. If you are interested in joining them please visit the event page https://fundraise.haea.org/team/275437 or reach out to Mike.

March 26th: Cincinnati, Ohio
The HAEA Youth Leadership Council will be spreading HAE Awareness at the Cincinnati Reds Opening Day parade. According to the Cincinnati Fire Department, this event drew in an estimated 100,000 people along the Opening Day Parade route in 2019, as well as an additional 60,000 at the “block party” outside the stadium. If you plan to be in the area and would like to attend the parade, please contact Mike Mallory by emailing him: mikemallory@haea.org.

For more information contact Mike Mallory at (513) 858-9370, or by emailing him: mikemallory@haea.org. Don't see an HAEA event in your town? Let us know so we can work with you to host an event near you!

Click here to get inspired and host an event in your area!

March Legislative Update Legislative Update

This month, the HAEA joined a coalition of patient advocacy groups in a signed letter to members of Congress in support of the Safe Step Act (H.R. 2279/S. 2546) This bill will allow for important reforms to insurance-mandated step therapy processes by requiring a timely and medically-appropriate appeals process. We will continue to track and advocate in favor of this important bill to ensure a more transparent, expedited process for medical appeals.

To find out more, or to join the HAEA's grassroot advocacy efforts, please contact John Williamson at john@haea.org.

Insurance Denials

Insurance Denials - How to Construct a Successful Appeal

Getting a denial for your HAE therapy can be stressful. The HAEA is here to support you through the process and help you get the care you need. Some important steps to remember:

Hello March

HAEA Health - March Tips!

Maintain a current supply of all HAE medicines.

As many of us move to newer preventive therapies, don't forget to order both your preventive AND rescue medicines ahead of time, and make sure those you have at hand are NOT expired. Preventative therapies have allowed thousands of patients to thrive, but it is also important to always carry your rescue medicine(s) with you. It's better to be prepared and not need them than to need them and not have ready access!

Please keep in mind that it is important to treat every attack or breakthrough attack as soon as possible. The sooner you treat - the sooner the symptoms can resolve. Anytime your HAE therapies feel like they’re not having the same effect as they normally do - make sure to call your doctor to rule out any other conditions or identify any other issues that may be causing more attacks than usual.

Don’t forget the HAEA Health Team is here for you!
We want to be there for you every step of the way! If you need assistance with finding a new physician, help answering an insurance question, or just want to ask about anything relating to your HAE journey, you can reach us by phone toll-free at (866) 798-5598 or by submitting a question online here www.haea.org. Remember WE are here for YOU!

Do you have questions about your current HAE treatment - or need a second opinion?

Consider visiting an HAE expert physician! The experts and staff at the US HAEA Angioedema Center in San Diego, and the members of the US HAEA Medical Advisory Board located throughout the country will work with you and your local treating physician to develop a treatment plan that allows you to live a full and productive life with HAE.

Our HAEA Health Advocates can help you find an HAE expert Physician near you, or help you make an appointment at the Center. Travel grants are available based on financial need. For more information, you can reach an HAEA Health Advocate at (866) 798-5598.

Clinical Trials

Clinical Trial Update

Throughout the years, the US HAEA has actively supported the research and development of new therapies for the benefit of HAE patients. Currently, the search for improved treatments and services continues with multiple ongoing recruitments for clinical trials taking place. The future is bright when we all support future research through clinical trial participation.

There are over 30 active trial sites across the U.S. enrolling patients in the APeX-S study, a worldwide clinical research study to investigate the long-term safety of an investigational oral medication to prevent Hereditary Angioedema (HAE) attacks.

Furthermore, a new study has been announced to evaluate the safety and efficacy of repeated subcutaneous (SC) administration of Lanadelumab in preventing angioedema attacks in adolescents and adults with non-histaminergic angioedema with normal C1-INH, and in adults with acquired angioedema (AAE) due to C1-INH deficiency. Trial sites are beginning to open and are ready to enroll patients across the country.

Additionally, there is an ongoing, small scale study to evaluate the Safety, Pharmacokinetics, and Pharmacodynamics of Lanadelumab to prevent Hereditary Angioedema (HAE) attacks in pediatric subjects ages two (2) to twelve (12) years of age.

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 john@haea.org to see if there will be an active clinical trial site in your area.

Nico's Lunchbox

Order a FREE Copy of Nico's Lunchbox for your Child's School Library!

Nico's Lunchbox is a children's storybook about a child with HAE. How exciting would it be knowing that there is a book in the school library that can teach others about HAE? The HAEA will donate a book to your child's school library in his or her name free of charge at your request.

This special hae day :-) promotion is only available for a limited time. Place your order between now and May 16, 2020, to make sure your child's school community will receive this unique gift.

It's EASY and FREE to participate! Complete the form by providing some information about you and your child, the school's address, and the name of the librarian. Once we receive your order, we will send a copy of Nico's Lunchbox to the school and send you a note alerting you that the book has gone in the mail.

Order your copy today!

Cookies4HAE Webinar

In Case You Missed the Cookies4HAE Webinar

On February 6, the HAEA held the first HAEA Youth Edition Webinar of 2020! This fun webinar hosted by our special 9-year-old guest Dana, provided a great way for you and your kids to get involved, in our upcoming hae day :-) campaign, Cookies4HAE pop-up event. The event is an opportunity to educate people about HAE while encouraging the community to donate to HAE research in exchange for cookies.

Dana, who is a cookie-baking, rare disease, fundraising pro, shared her tips and tricks to creating a successful hae day :-) fundraiser.

During her presentation, Dana talked about the three most important ingredients for a successful cookie pop-up event: cookies, kids, and customers! She also discussed her experiences on the importance of finding a great location, creating fun signs, and sharing your story with people in your community.

What are the important elements of a great cookie pop-up?
If you love cookies, enjoy talking to people, and want to raise money for HAE research, this is the perfect event for you! And in case you need help, we prepared a step-by-step guide to hosting a successful Cookies4HAE pop-up that will guide you through planning, baking, and promoting your pop-up event.

Join the Cookies4HAE team to help us reach our fundraising goal that will go towards funding HAE research!

If you would like more information, please email Lisa Facciolla at Lisa@haea.org to get your FREE step-by-step guide for hosting a successful cookie pop-up for hae day :-)

Click here to watch the webinar on YouTube!

#BeyondHAE Podcast
#BeyondHAE Podcast

Have you listened to the #BeyondHAE podcast? Each month we share a story from a different youth host from the HAE community. Their stories are a true testament to the challenges and triumphs that we experience as a community.

Episode 6 is hosted by Ava, who is a caregiver to her little sister who has HAE. In this episode, Ava provides insight into how she has supported her sister during her HAE journey. While coping with a family member with a chronic health condition isn't easy, oftentimes there are important lessons that are learned along the way. It's important to remember that undiagnosed family members and caregivers often play a big role in supporting their diagnosed family member and that HAE truly affects the whole family.

Listen to the Podcast here!

Patient Spotlight - Beth
Patient Spotlight - Beth

Every month throughout 2020, we will spotlight a different patient and their unique HAE story. This month we will be Spotlighting Beth. We hope you enjoy following her story during the month of March.

"Hello! My name is Beth and I live in Russell Springs, Kentucky. Having HAE has impacted every single aspect of my life. My journey with Hereditary Angioedema (HAE) has been one of trials and errors and moments of almost losing my life.

My local physicians had absolutely no idea what we were dealing with, and continued to treat me in the only way they knew how (so many unnecessary medications), and the next 16 months would result in spending weeks at a time in a hospital two hours away from my family and life.

Fast forward to October 2014 when I changed physicians after relocating closer to a major hospital. She immediately sent me to The Cleveland Clinic which would become my Godsend! After the visit, the specialist there diagnosed me with HAE with Normal C1-Inhibitor. The physician decided it was worth a shot to go ahead and try an HAE therapy. This was probably one of the most emotional and memorable days of my life, because I finally had an answer and I finally had hope!"

Legislative Advocacy Webinar

Take Action by Joining the Advocacy Webinar

Join us for the HAEA Advocacy Webinar with the Health and Medicine Counsel of Washington (HMCW) on Thursday, March 5th. The webinar will cover: 1) new Congress’ priorities, 2) issues that will impact the HAE community in 2020, 3) what can you do to defend HAE patient rights and access to healthcare, 4) how can you protect charitable assistance programs, and more. This is a unique opportunity to learn first-hand about how to get involved in advocacy and help protect patients access to health-saving medications

Webinar Link: https://haea.zoom.us/j/792238296  
Phone: +1 646 558 8656 (Webinar ID: 792 238 296)

Click here to say you're going!

Emotional Toll Webinar

Learn How You Can Manage The Emotional Toll Of HAE By Joining This Webinar

An HAE diagnosis can be a stressful process for the whole family. From the arduous process of getting an accurate diagnosis, to the trial and error of finding the right treatment plan, we want to make sure you have the tools you need to manage the emotional toll of HAE. Join us for this webinar where we will share resources, and best practices on staying emotionally healthy in this journey.

Webinar Link: https://haea.zoom.us/j/506214826  
Phone: +1 646 558 8656 (Webinar ID: 506 214 826)

Click here to say you're going!

Meet and Greets

HAEA Meet & Greet!

Thank you to all of our HAE friends in Atlanta, GA for participating in a great HAEA Meet & Greet! Mike and John shared information about the services and programs available under our four pillars: Health, Advocacy, Engagement, and Advances in Research. The event also served for everyone to meet their HAE neighbors and community. Check the HAEA Events calendar for an HAEA Meet & Greet near you. Click here or reach out to find out how to help organize and host an event near you!

March 8th: Charlotte, North Carolina Meet & Greet

Register Here

March 26th: Cincinnati, Ohio Meet & Greet

Register Here

April 19th: San Juan, Puerto Rico - HAEA Meet & Greet

Register Here

April 26th: Boston, Massachusetts Meet & Greet

Register Here

Want to host a Meet & Greet or learn more about the program? Contact, Mike Mallory mikemallory@haea.org or (513) 858-9370. 

The HAEA is a patient advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote disease education and awareness. We provide personalized services to address the unique needs of HAE patients and their families, which include helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade the patient quality of life through improving diagnosis and knowledge of the disease, and encouraging a tailored, patient-focused use of available therapeutic options. The HAEA is product-neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies.

The US Hereditary Angioedema Association
10560 Main Street, Suite PS40
Fairfax City, VA 22030


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