2020 is shaping up to be a very busy year for our HAEA volunteer legislative grassroots advocacy team!
We are excited to announce that we will be hosting a webinar on March 5th to discuss the legislative agenda for 2020 and its impact on the HAE patient community. This is a great opportunity to learn more about the HAEA’s advocacy work on behalf of our members, and get involved in the fight for patient rights. Let's continue to stand up for patient rights, protections, and access to meaningful healthcare coverage together. Make sure to save the date for this important webinar!
Additionally, planning is already underway for the annual Capitol Hill Day scheduled for the summer of 2020. Stay tuned for the official date announcement coming soon.
The HAEA is also keeping an eye on important legislative and judicial changes that affect our patient community. Here are some of the highlights:
Moving into such a busy year, we would like everyone to remember that positive change can be driven by advocacy and engagement in the community. We look forward to an exciting year of participating as a community to better the lives of all rare and chronic disease patients.
- Legislation addressing drug pricing and surprise medical billing appears to be stalled at this time. We are hoping that progress can be made between now and May, so this legislation can ride along when Congress must act on several expiring health authorities. Majority Leader Steny Hoyer (D-MD) reaffirmed that the House continues to prioritize advancing legislation on surprise medical billing, drug pricing, and solidifying protections for individuals with pre-existing conditions.
- The Supreme Court declined a request by Democratic attorneys general to expedite the review of a lower court on the constitutionality of the individual mandate of the Affordable Care Act (ACA). The issue is not likely to be resolved prior to November’s election.
To find out more, or to join the HAEA’s grassroot advocacy efforts, please contact John Williamson at firstname.lastname@example.org.
Current Clinical Trials
Right now, there are over 25 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. Find out if there’s a site enrolling near you!
Recently we announced that there will be a study 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-Inhibitor deficiency.
We look forward to the opportunity to keep our patient community informed as to the available trial sites, and the progress of the study.
Also, there is also an ongoing study to evaluate the safety, pharmacokinetics, and pharmacodynamics of Lanadelumab to prevent Hereditary Angioedema (HAE) Attacks in pediatric subjects 2 to12 years of age.
If you have HAE type 1 or 2, HAE with normal C1-Inhibitor or Acquired Angioedema (AAE), and are interested in learning more about new clinical studies to prevent attacks, then please contact John Williamson at email@example.com to find an active clinical trial site in your area.
Thanks to all Who Fundraise via Facebook!
Facebook fundraising was a huge success in 2019. We want to thank everyone who participated in hosting a Facebook fundraiser in support of the Hereditary Angioedema Association (HAEA). Fundraising through Facebook is an easy way to get your family and friends involved while raising awareness of HAE. Your contributions truly make a difference!
It's a New Year for the Advance HAE Scientific Registry!
Your final 2019 Quarterly Report is now available on the Registry’s online portal! Quarterly Reports help provide a complete picture of how you are living with HAE, as well as valuable information needed to advance research. Scientists use the data on your Registry Reports to understand your health over time, enabling further research to be accomplished.
Not yet a member of the Advance Scientific Registry? Start off the new year by joining and helping to advance HAE research!
Pam King HAEA Fall 2020 Scholarship Applications are Now Open
Fall 2020 Pam King HAEA Scholarship Applications open February 1st. (read more) The scholarship program provides financial support for HAE patients seeking to improve their lives through academic achievement. College scholarships are available to US citizens who are diagnosed with HAE, and are awarded to students who demonstrate the characteristics that Pam brought to the HAE community: relentless hard work, resilience, courage, and passion.
You can support the Pam King HAEA Scholarship Program by making a donation.
We invite you to celebrate Pam's legacy by contributing to this worthy educational cause. Your financial support will fulfill Pam's goal of empowering young patients to break free of the impediments caused by a rare, chronic disease and embrace a better future by pursuing a college degree. Scholarships are especially important for young people in our community because families with HAE often face financial challenges caused by the many burdens that result from dealing with the condition.
Your generous scholarship contribution will help inspire, educate, and empower young HAE patients who can achieve a brighter future through academic success. Together we can help make their dreams come true.
February's #BeyondHAE Podcast host is 13-year-old Luke from Illinois. In this episode, Luke talks about his fear of needles and how he found the strength to overcome his fear so that he could be proactive in treating his HAE attacks. Luke credits the strength he found to his involvement in sports and his desire to stay active despite his frequent swells. We hope that you too can find strength in Luke's story, knowing that you are not alone.
Find the #BeyondHAE podcast on all major podcast platforms including iTunes and Spotify. Don't forget to subscribe to get an update when new episodes are available.
Send a copy of Nico's Lunchbox to your child's school library!
Starting on February 28th, you will be able to order a copy of Nico's Lunchbox for your child's school library! How incredible will it be knowing that there is a book in the library about a child with HAE?!
As part of the 2020 HAE Day awareness campaign, the HAEA is offering to send a FREE copy of Nico's Lunchbox to your child's school library. Join us in spreading HAE awareness and promoting education about rare diseases. Stay tuned for information on how to participate in this exciting opportunity!
We would love to hear your thoughts about Nico's Lunchbox after reading it.
Every month throughout 2020, we will spotlight a different patient and their unique HAE story. This month we will be Spotlighting Jenn. We hope you enjoy following her story during the month of February.
"My name is Jenn, I’m from Cadillac, MI. Hereditary Angioedema (HAE) is something that is a major part of my life. I have no idea when an attack is going to strike and what I am going to have to miss out on because of it.
The HAE treatments have made a giant difference in my life. I still have to be careful of what I do but I can live a pretty normal life since being on medications.
It was because of the travel grant, that I was able to go see an HAE expert. My experience at the Angioedema Center was amazing. I was very ill walking in the door and they were calm and caring. They explained all the different types of HAE and the treatments at the time. After the visit, they worked with me, my local doctor and insurance to help get the correct medicines. They were always on hand to talk to and help. We tried different meds and doses until we found the winner. I am truly grateful to the Angioedema Center and the Hereditary Angioedema Association (HAEA). Without them, I might not be here today." - Jenn
Join Dana (Cookies4Cures founder) and other kids in the HAE community to raise money for HAE research by joining in the Cookies4HAE pop-up event!
Have you and your kids been looking for a way to give back to the HAE community but haven't been able to come up with an idea? Dana is a cookie-making, fundraising pro, and she is hosting a webinar and inviting YOU to join her in selling homemade cookies to raise money for HAE research.
Dana is a passionate 9-year-old girl from Colorado who has raised over $100,000 for rare disease research. Now, she has decided to partner with the HAEA to help YOU develop your own fundraiser. Join us on February 6 at 7:30 PM EST, 4:30 PM PST to find out how you can join our Cookies4HAE, HAE Day fundraiser. During the webinar she'll share all her cookie secrets and her recipe for a successful fundraiser.
Webinar Link: https://haea.zoom.us/j/441091110
Phone: +1 646 558 8656 (Webinar ID: 441 091 110)
Positive change is driven by advocacy and community engagement. Learn how you can make a difference by being a part of the HAEA patient advocate community!
Webinar Link: https://haea.zoom.us/j/273470302
Phone: +1 646 558 8656 (Webinar ID: 273 470 302)
Learn How You Can Take Action by Joining the Advocacy Webinar
Join us for the HAEA Advocacy Webinar with the Health and Medicine Council 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.
Webinar Link: https://haea.zoom.us/j/792238296
Phone: +1 646 558 8656 (Webinar ID: 792 238 296)
HAEA Meet & Greet!
Our HAEA Meet & Greets were a huge success in 2019 so we will be hosting even more in 2020! Each month, the HAEA will be hosting a Meet & Greet program in a new city so be sure to keep your eyes on the HAEA events calendar for a Meet & Greet near you.
We kicked off the first of many Meet & Greet programs for 2020 in Scottsdale, Arizona. Mike, John, and Lois met with over 30 patients and caregivers to review the many resources and programs available to HAE patients. HAEA Meet & Greets are a great place to ask questions and gain valuable information and support from others in the HAE community.
February 23rd: Atlanta, GA Meet & Greet
March 8th: Charlotte, NC Meet & Greet
Want to host a Meet & Greet or learn more about the program? Contact, Mike Mallory firstname.lastname@example.org or (513) 858-9370.
March 26th: Cincinnati, Ohio Meet & Greet
2020 HAE IN-MOTION® Fundraising & Awareness Events!
Are you looking to host an HAE event but are not sure where to start? Mike is here to help you make your event a huge success!
Or would you prefer to host an online fundraising event? The HAEA has added a new tool to help you!
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 Mallory.
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 are interested in joining them, please visit the event page or reach out to Mike Mallory.
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.