#BeyondHAE
It is October! This means that it is HAE Youth Advocacy Month! For the month of October, we will celebrate the incredible HAE youth community and how young people affected by HAE shine #BeyondHAE. Share your story by posting a picture doing an activity that makes you happy - to enter the challenge and be eligible to win a VISA gift card, make sure to include the #BeyondHAE sticker in the photo. Stay tuned throughout the month of October as we show you who our young patient community is, #BeyondHAE.
*If you are under the age of 25 and have not received a #BeyondHAE sticker, please email Lisa Facciolla with your current mailing address.
#BeyondHAE Youth Produced Podcast Series
Do you enjoy listening to a good podcast? Stay tuned for the upcoming #BeyondHAE Youth Produced podcast series. The #BeyondHAE podcast will feature stories from young patients and their family members on living with HAE. Prepare to laugh, be inspired, and simply relate to these unique stories. The first episode of this monthly series will be available in November.
#Families4HAE Fundraising Campaign Kicks Off Today!
We need your help to ensure that these programs continue to thrive, offering kids and young adults with opportunities to feel empowered in their diagnosis. By offering innovative programs, the HAEA has provided young people from all corners of the US with opportunities that inspire, empower, and engage them to realize their potential. We need your help to ensure that these programs are able to serve as many kids as possible.
For the next two months, we will share stories about how the HAEA Youth Programs have inspired young patients and their family members to take charge of their diagnosis, build support networks, and advocate for a better future.
“I began my advocacy at nine years old after the late Mrs. Pamela King and my mother worked together for me to say a speech at the HAEA 2013 Patient Summit in Florida. Ever since then I have tried to raise awareness wherever I go including speaking at colleges, sports events, conferences, and even internationally. I have even spoken to all of my teachers and staff about HAE. Years ago I would never believe the things I’m doing today.” - Noah
"The HAEA has provided our family with invaluable resources over the past few years. They have pointed us in the direction of other families/children who have been instrumental in my son coming to terms with this condition and realizing that things are going to be "ok." The HAEA staff goes above and beyond in making sure patients and families have access to everything they need. Not only physically, but emotionally as well." - Amanda
If you have seen your child or family benefit from the HAEA Youth Programs, if you wished you had HAE empowerment programs when you were young, or if you simply believe in the value of providing support to young patients, this is your opportunity to make a difference that will have a genuine impact.
We have two months to reach our $15K goal, so please share the campaign with your family and friends. To show our appreciation, when you donate $20 or more, we will send you a #Families4HAE Pura Vida bracelet.
To donate to the #Families4HAE Campaign
Send a check to:
Hereditary Angioedema Association
10560 Main Street Suite PS40
Fairfax City, VA 22030
*Be sure to write Families4HAE in the memo
or
October Health Team Focus
The Health Insurance Open Enrollment is coming soon! Here are a few tips to ensure you have adequate coverage for 2020.
- Be Proactive – Don't Wait
- Know Important Dates & Deadlines
- Employer-based insurance: Check with your HR (Human Resources) Department
- ACA (Affordable Care Act / Obama Care): November 1 - December 15
- Medicare Open Enrollment: October 15 - December 7
- Medicare Advantage - Part D (prescription drug plan): January 1 - March 31
- Research - Compare and ask questions of the different options available
- Use your Resources
- HR Department
- Employer-sponsored plans
- Healthcare.gov
- ACA / Marketplace plans
- Medicare.gov
- Medicare / Medicare Advantage
- Patient Support Services
- Haegarda Connect - 844-423-4273
- One Path - 866-888-0660
- Ruconest Solutions - 855-613-4423
- HAEA Health Team - 866-798-5598
Schedule an appointment with the experts at the US HAEA Angioedema Center
Looking for an expert second opinion for an official diagnosis? Still working to get the best treatment plan in place to manage your Angioedema?
The experts and team at the US HAEA Angioedema Center at UCSD can be a great resource for you and your local healthcare team in getting the diagnosis and treatment plan that works best for you. Our goal is to make sure you are able to live your fullest life with your angioedema.
We offer travel grants based on financial need to assist with getting to the Center.
If you are interested, please contact an HAEA Health Advocate at 866-798-5598 and we would be happy to assist you.
Health Legislative Updates!
The US HAEA is continuously monitoring any challenges that may threaten patient access to therapies, but we need your help in advocating on behalf of the HAE patient community. Together, we can ensure that patients continue to have access to and receive reimbursement for life-saving therapies. Following are some of the HAEA’s Advocacy Strategic Goals as well as the latest legislative updates.
HAEA Advocacy Strategic Goals:
1. Lead community efforts to improve patient access to quality, affordable healthcare, and innovative treatments.
2. Expand the HAE and related conditions research portfolio at the National Institutes of Health (NIH) through growth in FY 2019 appropriations and demonstrated a congressional interest in this area.
3. Monitor and comment upon legislative and regulatory proposals affecting charitable assistance programs.
4. Maintain an active role in rare disease coalitions protecting access to and reimbursement for treatments.
Here are some of the latest updates from our legislative advocacy efforts:
Last month, the US HAEA joined 29 patient-based organizations in endorsing a Senate Joint Resolution introduced by Senator Mark Warner (D-VA) that would stop a guidance issued by the administration that would substantially erode the protections on coverage in the individual marketplace for patients with pre-existing health conditions. Last month, the Senate Finance Committee held a markup of comprehensive healthcare legislation, which led to the the bipartisan Prescription Drug Pricing Reduction Act (PDPRA) to be successfully moved out of committee.
Congressmen Andre Carson (D-IN-&) and Rich Hudson (R-NC-8) have re-introduced legislation to expand and establish medical research, professional education, and public health programs specifically focused on rare diseases, including HAEA. The Rare Act is now H.R. 4228 and it includes a number of key initial cosponsors, which suggests that it has a good chance to move forward in the current Congress.
We also expect the President unveil a major health care initiative in the upcoming months. According to the Wall Street Journal, the administration is considering provisions that would expand health savings accounts, high-risk insurance coverage pools, and link the transparency of health providers' prices to quality metrics.
We will continue to monitor these changes and advocating on behalf of HAE patients. To find out more, or to join the HAEA’s legislative advocacy efforts, please contact John Williamson at john@haea.org.
Register For The 2020 HAE Global Conference - Frankfurt, Germany
The 5th HAE International Global Conference will take place in Frankfurt, Germany from May 14th to 17th, 2020.
Please review the key dates listed by HAEi as you make plans to attend. Please note that, in order to attend, you need to have a valid passport.
October 7-9: Travel Grant Lottery Winners Notified & General Registration Opens
- All HAEi Travel Grant recipients will receive an email with a unique Travel Grant code per person inviting them to register for the 2020 HAE International Global Conference. The email will also include access to the system and specific information about the registration deadline.
- Applicants who did not win the lottery will be placed on the waitlist.
- The registration system opens on October 7, and the travel grant recipient winners can register for the conference with their unique code.
- A second round of travel grants will be allocated to people on the waitlist. The recipients of these travel grants will be required to register within a given deadline.
- If you wish to attend the 2020 HAE International Global Conference but do not need a travel grant, you can register for the conference directly on the registration page.
November 3: Deadline for Travel Grant Recipient Registration
- The Travel Grant codes will no longer be valid by November 3. Failure to register indicates that you forfeit your Travel Grant, and this will be passed on to a person on the waitlist.
- Registration for the 2020 HAE Global Conference is still open for those who do not require a travel grant.
The registration fee for patients and caregivers (close relatives) for the 2020 HAE Global Conference will be:
- EUR 125 per person (who stays in a shared bedroom for 2-4 people)
- EUR 250 per person (who choose to stay in a single room)
*Fair use principles - If you receive a travel grant, you understand and confirm that you will attend all sessions on both Friday, May 15, 2020, and Saturday, May 16, 2020. Failure to attend the sessions will result in being charged the full room rate for the three nights at the conference venue (which is currently covered by HAEi).
The room rate per night is: Single room and double room EUR 199 plus taxes. Three-bedroom EUR 209 plus taxes. Four- bedroom EUR 229 plus taxes.
Every participant, including those who have received the travel grant, must pay the registration fee. This fee includes:
- 3 nights of accommodation in the selected room type arriving on May 14, 2020 and departing on May 17, 2020 at the Sheraton Frankfurt Airport Hotel and Conference Center (additional nights can be purchased during the registration process);
- Breakfast from the morning after the day you check in to the conference hotel, until the morning of the day you check out;
- access to full conference events;
- lunch on Friday and Saturday; and,
- welcome reception on Friday evening and dinner on Saturday evening.
If you receive a travel grant – HAEi will book and pay the cost of your flight ticket to/from Frankfurt in the cheapest possible economy class. HAEi will NOT reimburse any flight tickets not arranged by HAEi.
Additional Costs
Please note that the following cost will have to be covered by yourself: transportation from your home address to your departure airport and back to your home, cost for visas or passports, cost for travel insurance and other related travel cost.
Have You Downloaded The Handy Advance HAE Mobile App?
It’s free! Just go to your app store and search for "ADVANCE HAE”
The app:
- offers a personal attack diary
- provides an easy to read graph of your HAE attacks over time
- enters your data automatically into the HAEA Scientific Registry for members
We have also added some NEW FEATURES to let you set reminders directly on the Advance HAE app! These can include reminders to:
- take your medication
- reorder your prescription
- be notified when new app features are available
This new feature is available now on iPhone and is coming soon to Android!
Current Clinical Trial
Right now, patients are being enrolled 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.
If you have Type I or II HAE, and are interested in learning about an oral medication that could become an alternative to injections or infusions to prevent attacks, then please contact John Williamson at john@haea.org to see if you qualify.
Nico's Lunchbox Pre-order!
We are thrilled to announce that Nico's Lunchbox will soon be available! Nico's lunchbox follows Nico, a young boy with HAE who, with the help of his mom learns to explain his condition to his friends at school. Stay tuned for updates!
The book will be available for the low price of $5.99 + shipping. This innovative book is a valuable resource for every family with small children. This is going to be a GREAT holiday gift so plan ahead and get your copy fresh off the press!
The HAEA will ship your order as soon as the book is available.
Price: $5.99 each – with free shipping for all pre-orders
Spring 2020 Pam King HAEA Scholarship Program
Thank you for Applying! The HAEA would like to thank all the incredible students who applied for the Pam King HAEA Scholarship Program for the Spring 2020 semester. We look forward to reviewing applications and sending out notifications in the first week of November!
Brady Club
Does your child LOVE receiving their Brady Club Activity Book in the mail? Imagine the smile on their face when they flip through the book and see their very own picture and story published! Encourage your child to become a Brady Club Celebrity by logging into the website or app, and submitting their very own superhero story. We will feature their picture and story in the Winter 2019 or Spring 2020 activity book AND send them a FREE Super Brady t-shirt in the mail.
"My kids loved being featured; it made them feel “famous”. - Nicole Jewell, Brady Club Parent
HAEA Spotlight
Every month throughout 2019, we are spotlighting a different patient and their unique HAE story. This month we will be Spotlighting Francis. We hope you enjoy following her story during the month of October.
"My name is Francis and I am from Newark, Delaware. It has been a long journey for me living with HAE. It has been a journey filled with suffering but also a journey of challenges and successes.
Imagine the possibilities
- Who would have thought or imagined that today we have 7 approved drug therapies for preventative and acute HAE attacks today.
- Who would have thought that my sister Patricia would be a patient representative for Africa in the Sub Saharan region, and has dedicated her life to raising awareness about HAE in a continent where culture and traditions hinder un-diagnosed HAE patients from talking openly about the condition and who suffer quietly and in solitude.
- Who would have thought that we now have an organization that brings patients together from all over the world to network and share experiences as we look forward to tomorrow with positive minds for ourselves and our children.
- Who would have thought that I now travel and feel safe since I know that if I get an attack I can self-administer the drug myself to prevent the attack from happening.” - Francis
2019 HAE IN-MOTION® Events!
This September, the HAEA has celebrated three exciting HAE IN-MOTION® events in the cities of Memphis, Fairfax, and Oregon! A big thank you to all those who participated and helped us make these events a success!
These fun family events help raise awareness within local communities, and generate funds for our HAEA patient support programs: the Pam King HAEA Scholarship Program, the Chris Whalen Compassion Fund, and the HAE Research for a Cure.
We will wrap up the excitement-filled 2019 HAE IN-MOTION® series with one incredible upcoming event in Providence, RI.
Saturday, October 5, 2019 - Roger Williams Park/Carousel Village - Providence, RI - (5K walk/run)
Come join us at our last 2019 HAE IN-MOTION® Event. Help us beat last year’s record-breaking attendance at the Providence HAE IN-MOTION® 5K! Remember last year’s donut truck, carousel rides, lemonade cart, pumpkin painting, a marriage proposal and, oh yeah, a 5k walk/run? What do we have in store this year? You will have to come out and see! Just #ImagineThePossibilities
After the event, make sure and stick around to enjoy the day at the amazing historic Roger Williams Park. The expansive property includes recreational ponds, public gardens, extensive walkways, tennis courts, ball fields, playgrounds, public art, and the Roger Williams Park Zoo. The Park also maintains several historic buildings used by the public, including the Bandstand, Museum of Natural History, Botanical Center, Temple to Music, and the Casino – just to name a few!
If you have questions or need help registering please reach out to Mike Mallory at (513) 858-9370, mikemallory@haea.org.
We are also starting to plan for the 2020 HAE IN-MOTION® events, Meet & Greets, fundraising events, and awareness events. Do you have a great idea for an event? Want to host an event near you? Reach out to Mike with your ideas!
Thank You to our 2019 Gold Level Sponsors (BioCryst, CSL Behring, Pharming and Takeda)!
It's HAE Youth Advocacy Month! We invite you to join Lisa Facciolla and members of the HAE youth community for a special edition webinar where we will discuss everything you need to know to participate in the #BeyondHAE social media challenge. We'll also talk about ways that you can raise HAE awareness in your own community, so if you've been wanting to get involved but need a little inspiration, this is the webinar for you!
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.
