US Hereditary Angioedema Association - HAEA
HAEA in Action October 2018 Newsletter   
Youth Advocacy Month

HAE Youth Advocacy Month - October 2018

The HAEA is excited to celebrate its first annual HAE Youth Advocacy Month. Join us this month as we spotlight young HAE patients and their family members who are making a difference by raising awareness about HAE. We challenge all of our young HAEA members to think of a way to raise awareness in your own local community during the month of October and share your efforts with us. Send any pictures and a brief description of your event to receive an HAEA PopSocket or wireless speaker

Need an event idea? There are MANY ways to get involved. Find one or more ideas below that works for you!

EDUCATE:
Awareness is an important part of educating others and developing community support for Hereditary Angioedema patients and families. Because HAE is rare, it’s even more important for every young person to spread the word.

ADVOCATE:
Advocacy is important because it can change the mindset of someone who is in a position to make the higher-level decisions that impact you.


INSPIRE:
There are many ways that you can inspire others to make a difference in the lives of HAE patients and fundraising is one of them! Funds raised go to three key HAEA programs to support patients:  The Pam King HAEA Scholarship Program, the HAEA Compassion Fund, and HAE Research.


If you need help thinking of a way to raise awareness, you can watch the most recent Youth Edition Webinar: Fundraising and Advocacy in the HAE Cafe or email Lisa Facciolla at lisa@haea.org



Open Enrollment

2019 Open Enrollment for Health Insurance Starts Next Month

Open Enrollment for next year’s Health Insurance Marketplace coverage will run from Thursday, November 1, 2018, to Saturday, December 15, 2018. Coverage 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, please join us on Thursday, October 18th at 7:30 pm for a special webinar: A Guide to the Health Insurance Marketplace with HAEA Health Advocate, Troyce Venturella. You will be able to submit your questions at any time during the webinar and our HAEA Health Team members will help guide you through the enrollment process. 


HAEA Staff Meeting

HAEA Teams Come Together For Patients And Planning

The HAEA Teams came together in New Jersey to plan for 2019, and to support the HAE patient community during their HAE IN-MOTION® 5K event in the beautiful Nomahegan Park in Cranford, NJ. HAEA staff spent the week reviewing future plans and HAEA member needs to better serve our entire community.


Support Group

Connect Through A Support Group

Try a little self-care! Join other HAE patients, caregivers, and family members as they share their day-to-day life experiences. We all need time to process and reset. A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges.
For more information or to join a group, please contact HAEA Health Advocate, Troyce Venturella at troyce@haea.org.

*Groups are currently meeting every other week (all are listed in Eastern Time):
Tuesday 12 noon
Tuesday 9:30 pm
Wednesday 7:30 pm
Thursday 11:00 am (mostly parent caregivers)
Thursday 7:30 pm 




Action Alert

Help Protect Charitable Assistance Programs

Nearly three-quarters of a million Americans receive support from charities, local and national, to help pay for their therapies and medications – support which can often mean the difference between life and death. Recently, insurers in 41 states have begun denying coverage to Americans living with debilitating diseases, simply because they receive assistance from charities.

Many HAE patients count on some kind of charitable support to help pay for their HAE therapies. H.R. 3976 is the Premium Assistance Bill created in the House of Representatives to amend the Patient Protection and Affordable Care Act that allows for certain third party payments. The Bill intends to revise the rule and allow charitable organizations to be charitable.

Access to Marketplace Insurance Act (H.R. 3976) has gained approximately 176 bipartisan cosponsors in a relatively short amount of time. However, in order to move the bill out of the House this year, we need your help to convince members of Congress to sign on and support H.R. 3976.

We want to make sure that our HAE patients’ voices are heard loud and clear on the importance and impact this bill will have on our community. In order to do this, we ask that you reach out and tell your members of Congress to cosponsor H.R. 3976 - to support this important legislation affecting the lives of rare disease patients. – We can help you reach out to your Representative.


Please contact john@haea.org for more information



Caregiver Awareness Month

November Is Caregiver Awareness Month 

November is National Family Caregiver Month and the HAEA would like acknowledge these caring people and the effort they make every day to help their HAE loved ones achieve lifelong health.

To celebrate Caregiver Month, we would like to feature stories about the unconditional love and commitment demonstrated by HAE caregivers. If you are an HAE patient, please share a brief video or email describing all that the caregiver in your family does for you, and the difference he/she makes in your life. If you would like, you can include a picture that we can post along with your story. We will feature some of these stories throughout the month of November on our different social media platforms. 


Please send your short video or email to mailto:ianiceviel@haea.org.



download the Brady Club app

Dear HAEA Kids and Families,

The HAEA is proud to launch some exciting new features of the Brady Club and we would like to invite you and your family to participate. The Brady Club is now available for download on your mobile device. Find it on the Android and IOS app store, under the Brady Club (*Look for Brady the Bear on the app icon). Once you download the app, register on our secure platform to gain access to all the features!

We want to make it fun and easy for your kids to learn about HAE!
1. Download The App
2. Register
3. Have Fun
4. Get Free Stuff In The Mail

Once you download the app and register, your kids will be signed up to receive a quarterly Activity Book in the mail. The Brady Club Activity Book is filled with fun games, information, photos and stories from other kids with HAE, and a special kids corner where an HAE specialist will answer questions about HAE.


Click Here to Register For The Brady Club!



Scientific Regsitry Quarterly Report

HAEA Scientific Registry Quarterly Reports Are Coming Soon!

It’s a brand new Quarter for Scientific Registry members. Your new Quarterly Report will be available on October 1st! Mark your calendars and fill out your Report online at https://sr.haea.org Help us advance our knowledge of HAE with every Report you submit to the Registry! Not yet a member and want to join?

Play a vital role in HAE research - visit https://www.haea.org/ci/form/registry to learn more.



Happy Halloween


Upcoming Events


Ruconest Webinar

HAEA Café Webinar: Managing The Burden Of Hae, A C1-inh Deficiency Disease

Link: https://bit.ly/2OEuTZ1 
Phone: +1 646 558 8656 (Webinar ID: 385 100 861)


Please Let Us Know You will Be Attending Here!.




Providence

Saturday, October 6th HAE IN-MOTION® 5K Event At Roger Williams Park - Carousel Village, Providence, Rhode Island!

You can help fundraise for the Pam King HAEA Scholarship Program on our next HAE IN-MOTION® 5K event on Saturday, October 6th at Roger Williams Park - Carousel Village, Providence, Rhode Island! Fundraise $500 individually or with your virtual team, and you and a guest can attend our 1st Annual HAEA Pam King Scholarship Program Benefit Event on Friday, October 5th. The Providence 5K is dedicated in loving memory of Pam King, who passed away from metastatic breast cancer on June 16th, 2018. Pam worked with the HAEA for the past ten years and was responsible for developing the Scholarship Program which we have renamed in her honor. All funds raised during the Benefit Event as well as the Providence 5K will go toward the Pam King HAEA Scholarship Program.

Register And Build Your Team Here, or contact Christine for details at cselva@haea.org!.




Finished!


Saturday, October 20th HAE IN-MOTION® 5K Event At Vista View Park, Davie, Florida!

Register For the Davie Florida 5K Here!

 


 

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.

 




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


  

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