HAEA in Action December 2018 Newsletter
A YEAR OF AWARENESS
It has been a very busy and productive year for our community, and the HAEA is grateful that so many of you took the time to participate in our HAEA sponsored events! We had record setting participation in: HAE IN-MOTION® 5K run/walk events hosted across the country; HAEA Treatment Education series webinars; Capitol Hill Day; Youth Advocacy and learning activities; hae day :-) events; the Global HAE Conference in Vienna, Austria, and the Advance HAE Scientific Registry.
Together, we have made great strides in the quest for improved HAE treatments and supporting groundbreaking research to continue to solve the remaining scientific mysteries of HAE. This year, the HAEA patient community welcomed another important FDA-approved HAE therapy. In addition, the US HAEA Angioedema Center announced the discovery of a promising new blood test that will facilitate treatment by clarifying the cause of swelling in the many patients who have an uncertain diagnosis. 2018 was also a record-breaking year for our Scholarship Program that we recently named after our Chief Operating Officer, Pam King. Pam, who passed away in June, was a staunch advocate for our HAE youth. We are happy to announce that the Pam King HAEA Scholarship Fund provided financial aid to help 42 college students achieve their lifelong educational goals and life aspirations.
As we get ready to celebrate the twentieth anniversary of the HAEA’s creation, we find ourselves more motivated than ever to lead the nationwide HAE advocacy movement dedicated to increasing awareness and education, empowering patient access to a suitable therapy, and fostering groundbreaking research that includes searching for a cure. HAEA friends can always count on us for authoritative, unbiased information, and highly personalized services that are delivered with the kindness and compassion one would expect from our staff of fellow HAE patients/caregivers.
We plan to expand our core services in 2019 with a particular focus on making sure our patient community has adequate access to and reimbursement for HAE therapies. HAEA friends can expect us to continue offering patient-centric programs and activities geared toward our longstanding goal—improving the quality of life for everyone in the HAEA community.
Finally, let me be the first to cordially invite you to the 2019 HAEA National Patient Summit that will take place this summer. You will soon be hearing more about this incredibly exciting, fun, and informative event.
We look forward to being part of your happy and healthy 2019!
My warmest holiday greetings,
US HAEA President
SAVE THE DATE – 2019 HAEA NATIONAL PATIENT SUMMIT
The HAEA is pleased to announce the 2019 HAEA National Patient Summit will be held in Atlanta, Georgia, from July 26-28, 2019. The Summit will commemorate the 20-year anniversary of dedicated patients and families joining together to establish this strong and vibrant HAEA community.
The Summit theme for 2019— ‘Imagine the Possibilities’—will frame a program that provides a sense of the past, a realistic assessment of the present, and a positive look to the future. This 20th anniversary HAEA gathering will offer an innovative format and unique programs that further unite the HAE community and guarantee a memorable and empowering experience for all.
Registration will open in January 2019, so stay tuned for more details and make sure to Save the Date!
2019 OPEN ENROLLMENT FOR HEALTH INSURANCE ENDS THIS MONTH
Open Enrollment for next year’s Health Insurance Marketplace coverage is about to come to an end. Register by Saturday, December 15, 2018 for coverage that starts on January 1, 2019. If you don’t have insurance through a job, Medicare, Medicaid, the Children’s Health Insurance Program (CHIP), or another source, the Marketplace can be an important insurance coverage resource.
For more information on Open Enrollment, you can contact an HAEA Patient Advocate Troyce Venturella here firstname.lastname@example.org.
HAE IN-MOTION® – Results
The 2018 HAE IN-MOTION® events were once again extremely successful thanks to the generosity and commitment of all our participants. With over 865 attendees across the country, these fun family events not only raised awareness within local communities, but funds raised by individual teams contributed greatly to three HAEA patient support programs: Pam King HAEA Scholarship Program, HAEA Compassion Fund, and HAE Research.
May this holiday season fill your home with love and laughter, and may the coming year be filled with health and happiness.
With all good wishes for the Holidays and the New Year!
From the US HAEA
2018 YOUTH WEBINARS!
This year, the HAEA offered a new series of webinars - HAEA Youth Edition - designed specifically for younger patients and their family members. If you weren't able to attend the live webinars, these videos are now available to watch on YouTube.
The playlist includes webinars on the following topics:
- Youth Edition Webinar: What is HAE?
- Youth Edition Webinar: Dealing with and Managing Stress
- Youth Edition Webinar: Fundraising and Advocacy
- Youth Edition Webinar: Preparing for College
- Youth Edition Webinar: How to tell people about HAE
We hope you find them helpful!
Congratulations to the Spring 2019 Pam King HAEA Scholarship Recipients! The HAEA is proud to have awarded scholarships to 29 students who are seeking to improve their lives through academic achievement. You can make a difference in the lives of HAE patients by donating to the Pam King HAEA Scholarship Fund. Please consider making an end of the year donation to this wonderful program to keep the vision of our late dear friend and colleague Pam King alive.
The HAEA Brady Club Winter Edition Activity Book is here! The Brady Club is designed for younger HAE patients and their siblings between the ages of 4 and 12, and is filled with fun activities, HAE health tips, stories from other Brady Club members, and a Q&A with HAE expert Dr. Sandra Christiansen (Dr. C) from the US Hereditary Angioedema Center at UCSD.
YOUTH LEADERSHIP COUNCIL!
Are you looking to connect with other teens and young adults with HAE? Sign up for the HAEA Youth Leadership Council, and join us for quarterly video group chats, webinars, and other HAE advocacy and awareness events!
DON’T LET STRESS TAKE AWAY FROM YOUR CELEBRATIONS
Enjoy the holidays stress-free. Here are a few tips from the HAEA Health Advocates to help you enjoy the season celebrations.
- Keep a positive attitude – no matter what is going on.
- Accept that there are events that you cannot control. (even though you may want to!)
- Learn and practice relaxation techniques; try yoga or tai-chi.
- Exercise regularly - Your body can fight stress better when it is fit.
- Eat healthy, well-balanced meals – this is possible even in the celebration time.
- Learn to manage your time effectively – you can’t do it all today and that is okay.
- Set limits appropriately and learn to say no to requests that would create excessive stress in your life – it is important to take care of yourself.
- Make time for hobbies, interests, and relaxation – take time for yourself.
- Get enough rest and sleep. Your body needs time to recover from stressful events.
- Seek out social support. Spend enough time with those you enjoy.
A FEW ADVANCE HAE SCIENTIFIC REGISTRY BASICS…
What is the Registry for?
Working together, we can improve accurate and timely HAE diagnosis, support optimal HAE treatment, and advance HAE research.
Who can join?
Patients diagnosed with HAE (all types) and their blood relatives.
Is it easy to join?
What is required to participate?
Registry members will be asked to provide a small blood sample and submit regular reports about how you are living with HAE.
Will I receive a diagnosis when I donate my blood sample?
No, all samples are de-identified to protect your privacy, so we cannot provide any clinical information to you.
How easy is it to login online or use the ADVANCE HAE mobile app?
Both are super easy to use – as easy as checking your email! You can get the App on Apple iOS and Android. The more you participate, the more information about your health is available at your fingertips!
US HAEA Advance HAE Scientific Registry – patient-driven research
HAEA MEMBER SURVEY
Don’t forget to update your HAEA membership information! The HAEA keeps you informed of the latest updates on:
- Current HAE therapies
- Patient events
- Educational webinars
- Clinical trial opportunities
- Legislative issues impacting patient care
- The most recent scientific breakthroughs, and more!
If you haven’t done so already, please complete this brief survey to update your HAEA membership. And for further assistance, please call toll free: (866) 798-5598 and ask for an HAEA Health Advocate. Thank you!
Start planning your 2019 event NOW!December may be the end of 2018 but here at the HAEA, we are busy planning for an exciting 2019. Have you been thinking of hosting a fundraising or awareness event but not sure what you want to do? Have an idea but need help making it happen? Reach out to Mike Mallory at email@example.com with your ideas!
HAEA TREATMENT EDUCATION SERIES
HAEA Café Webinar: HAE Community members share their experience with C1-INH subcutaneous therapy
Join us to ask questions and learn more.
Phone: +1 646 558 8656 (Webinar ID: 133 129 321)
The HAEA is a patient advocacy and research organization committed to actively engaging our community in a wide variety of grass roots 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 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.