Dear HAEA Friends,
Happy hae day :-) to all!
We are grateful that so many HAEA friends celebrate this very special day with events and fundraisers that directly support HAE research, scholarships, and travel assistance for those who could otherwise not afford to see an expert angioedema physician. As you will read below, the HAEA is very excited to offer a brand new HAE Information Kit that provides exceptional educational material.
The HAEA exists to enthusiastically serve and engage our community! Most of the programs and activities you will read about below offer opportunities for you to get involved! Also, please keep in mind that we are here to help solve your HAE-related needs, be it a difficult insurance matter or a referral to an HAE expert physician.
Warmest regards to all,
Tony
US HAEA President and CEO
Celebrate hae day :-) on May 16th every year!
Established by a US Senate Resolution to recognize the accomplishments of our strong and united patient community, HAEA friends and families celebrate hae day :-) on or around May 16th every year with HAE events, fundraisers, and awareness activities. Of course, an hae day :-) activity can be held any day of the year!
How can I personally contribute to hae day :-) this year?
1. The HAEA has created the NEW Hereditary Angioedema Information Kit, just for you!
Prepared in collaboration with HAE expert physician/scientists, the HAE Info Kit is a comprehensive set of authoritative, HAE-specific documents to educate teachers, school nurses, health care professionals, work colleagues, even family, and friends.
The HAE Info Kit explains HAE, provides an overview of current HAE therapies, and printed HAE resources:
- A Guide to HAE – a pocket guide to better understand the disease state, symptoms, attack triggers, diagnosis, treatment options, and more.
- HAE Poster – a perfect resource to bring to your local urgent care
- ER HAE Infographic – easy to read HAE disease facts that you can share with your peers
- US HAEA Angioedema Center Card – details the many ways the Center can partner with your own HAE physician
- HAEA CME Card – 3 free online courses available to your HAE healthcare provider
2. SUPPORT the hae day :-) online fundraising campaign!
Join the hae day :-) Facebook fundraising campaign, running from May 1st to May 16th - hae day :-)! Each HAEA Friend who participates in the campaign on FB is contributing to improve HAE awareness, expand HAE research, and support educational opportunities for those in our HAEA community.
Share with others the hae day :-) Facebook fundraising campaign, and tell your FB Friends that any contribution, no matter how large or small, can make a big difference to the lives of HAE patients! (Contributions are also tax deductible)
Celebrating hae day:-) by educating others about this ultra-rare disease, handing out a HEA Info Kit, or sharing the hae day :-) FB fundraising campaign, supports your fellow HAEA friends and families, and helps the fundamental goal we all share-- increasing quality of care and saving lives. Order one or more NEW HAE Information Kits today and distribute them within your local community – kids can get involved, too! Contact HAEA Patient Advocate, Mike Mallory, at mikemallory@haea.org to order your HAE Information Kit today!
Order one or more NEW HAE Information Kits today and distribute them within your local community – kids can get involved, too! Contact HAEA Patient Advocate, Mike Mallory, at mikemallory@haea.org to order your HAE Information Kit today!
The 2019 HAEA National Patient Summit hosts a Special Professional Program for Your Physician
The 2019 National Patient Summit- Imagine the Possibilities has something for everyone, including your physician. This year, the HAEA will host a special Professional-Scientific Program that focuses on significant HAE-related issues. This CME accredited educational program is designed specifically for physicians, scientists, nurses, and medical professionals interested in Hereditary Angioedema (HAE). Invite your own HAE doctor to join us in Atlanta on Friday, July 26th!
Space is limited and already filling quickly, so let your physician know about this incredible educational opportunity today!
The US HAEA Webpage is now available in Spanish!
¡Nuestra página de internet está ahora disponible en español!
Congratulations to the Fall 2019 Pam King HAEA Scholarship Recipients!
The HAEA is proud to support HAE patients as they work to pursue their life long educational goals and aspirations.
Spring Brady Club Activity Books are HERE!
If your kids aren't yet registered for the Brady Club, make sure they join today, so they can receive Brady’s latest Activity Books in the mail. Brady Club Activity books are designed for kids age 12 and under to provide a fun and interactive HAE learning experience. Spring 2019 Activity Books will be mailed out to members this week - with a special giveaway inside!
Youth Edition Webinars NOW available on YouTube!
Anxiety is normal for people living with a chronic and unpredictable health condition. Hear from other patients, as well as a trained mental health professional about coping strategies and techniques to better manage anxiety in your life, particularly as it relates to HAE.
Health Legislative Update!
The Centers for Medicare and Medicaid Services (CMS) finalized a rule that will apply to copay accumulator programs, to prevent coupons from drug manufacturers from being applied toward a patient’s out of pocket costs. Both West Virginia and Virginia have recently passed laws to ban these practices by third-party payers, with more states considering a similar ban.
The HAEA is diligently working to protect patient access to therapy and will be fighting this rule on copay accumulators. If you would like more information, or if you would like to join our advocacy efforts, please contact HAEA Patient Advocate, John Williamson, at john@haea.org.
Congratulations to our Advance HAE Scientific Registry members!
Registry members have submitted vital Reports containing data that is crucial to future HAE research. Last year, Advance HAE members increased their report submissions by 64% over the previous year! And this year, members are already 10% ahead of last year in returning Quarterly Reports!
If you have not already filled out your Quarter 1 Report, it’s not too late. Submit yours today! Data makes a difference in the lives of all HAE patients!
Keep up the good work and thank you for advancing HAE research!
FDA conference - Patient Perspectives on the Impact of Rare Disease: Bridging the Commonalities
HAEA Director of Research, Janet Long, and HAEA executive assistant and HAE caregiver, Nicole Jewell, participated in the FDA conference- Patient Perspectives on the Impact of Rare Disease: Bridging the Commonalities.
Panelists included FDA staff, physicians, and patient representatives from three rare disease populations: Huntington’s Disease, Sickle Cell Disease, and Friedrich’s Ataxia. All of the panelists emphasized the need for physicians and researchers to focus more closely on the burden of living with a rare disease, that is, patient quality of life.
During the sessions, the FDA addressed issues of medication administration (such as, oral medicines for those whose disease makes it difficult to swallow pills), difficulties getting the medical community to fully recognize a rare disease, and the need for patients to make their voices heard.
Furthermore, the FDA discussed patient registries - like the US HAEA’s own Advance HAE Scientific Registry - emphasizing that there is growing recognition of the value of patient-provided reporting as they consider therapies for FDA approval.
The FDA closed with these recommendations for rare disease patients:
1) Use your voice - tell your story. (In other words, participate in advocacy opportunities, such as the ones HAEA offers).
2) Be patient - progress in new therapies or better formulations of existing medications takes time - don’t give up.
3) Be mindful of caregivers in your disease community - they need access to resources and compassion as well.
The conference was an opportunity to highlight commonalities between the over 7000 rare diseases represented in the US, and was so well- attended that it required two overflow rooms and online viewing.
HAEA Health Tips!
Here are some tips from the HAEA Patient Health Team for staying positive and healthy all month long.
- Spend time outside walking with others, share your HAE story, and the impact of your journey on your life. Listen to the life stories of others and draw strength from your common experiences. A great way to share with others is by participating in a local HAEA Meet & Greet or HAEA Awareness Walk.
- Start or update your HAE journal with treatment dates so you don’t miss an upcoming treatment. Having an individualized treatment plan in place can decrease your stress and keeping a journal is a great way to stay on track.
- Make an appointment with your HAE treating physician to go over, review and update your care plan. Review what is working and what might need to change; remember to discuss other medical conditions that you might have so your care plan reflects all your treatments. **Don't forget to invite your HAE treating physician to the Scientific-Professional Program at the 2019 National Patient Summit.
- Contact your Specialty Pharmacy to go over renewal dates for your acute and preventative HAE medications. Knowing the renewal date ahead of time can decrease your stress and help you to plan ahead.
- Join an HAEA Virtual Support Group if you’re feeling lonely or overwhelmed, or if you simply need to talk to others.
The HAEA Health Team is here for you. If you need assistance with physician referrals, insurance reimbursements, or if you have general HAE questions, please reach out to any of our HAEA Health Advocates.
hae day :-) 2019 Virtual walk/run
It is not too late to register! Sign up and start logging your steps. You can get some good exercise, spread HAE awareness, and fundraise for hae day :-) 2019! The HAEA has launched its 1st virtual walk/run to commemorate hae day :-) with everyone’s steps counted between February 28th (Rare Disease Day) and May 16th (HAE Day), 2019! Registration is free, and we will be tracking the progress of all of our HAEA community participants to see how much distance was covered together to spread HAE awareness. Funds raised from the virtual walk/run will support the HAEA’s three main programs: Pam King HAEA Scholarship Program, HAEA Compassion Fund, and HAE Research! All registered participants that raise $50 or more will receive an official 2019 hae day :-) virtual walk/run keepsake Finisher Medal! Register today here, set-up your team, and start logging in your distance starting now! Ask your friends and family to join you!
- Saturday, June 15, 2019 - Danada Forest Preserve, Wheaton, IL - (5K walk/run)
- Sunday, July 28, 2019 - Piedmont Park, Atlanta, GA (5K walk/run)
The HAEA Headliners is a new section of the HAEA Newsletter dedicated to special events hosted by our HAEA members and HAEA Heroes. If you’ve hosted an HAE awareness or fundraising event recently, please send us a brief description and a photo and we will include it in the next newsletter.
Grab a Tee for HAE- Scottsdale, Arizona
On April 7th Katie and Tim hosted a wonderful HAEA fundraising event in Scottsdale, AZ. Friends and family spent a fantastic afternoon together supporting Hereditary Angioedema patients while having fun at TopGolf.
Lyndon's Walk Across America for HAE, Cullman, Alabama
Saturday, May 11th at Sportsman Lake Park
- 11:00 AM - 1:00 PM Meet, greet and eat
- 1:00 PM - 2:00 PM Balloon release in memory of Lyndon
- 2:00 PM - 3:00 PM Talent show, dark tie dye station, and karaoke
- After dark - Special Blood documentary viewing
*If you are interested in creating an HAE fundraiser or awareness event in your area or you would like to discuss your own great event idea, please contact Mike Mallory at, mikemallory@haea.org, or 513-858-9370.
HAEA Meet & Greet!
The HAEA can plan a Meet and Greet event in your local area! Meet and Greets are designed to offer an overview of the great programs available through the HAEA, as well as give you an opportunity to connect with other patients in your area.
Through this program, you and your family member or caregiver can: Learn about HAEA programs and services available to you, hear from HAEA staff, ask questions, and meet others in the HAE community.
Check out the next Meet and Greets listed below! See you there!
For more information, please contact, HAEA Patient Advocate, Mike Mallory at 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.
