US Hereditary Angioedema Association - HAEA
HAEA in Action November 2018 Newsletter   
Online Survey

HAEA Member Survey

The HAEA wants to keep 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!
 
To continue to receive information on all this and more, please complete this brief survey to update your HAEA membership.
 
If you need further assistance, please call toll free: (866) 798-5598 and ask for an HAEA Health Advocate. Thank you!



Please respond to the quick survey here! 

 


Healthy for the Holidays

Get Ready for Healthy Holidays

The Holiday season is upon us and it’s a good time to think about how you can enjoy the season in the most happy and healthy way. As you plan your shopping list, schedule family visits, and plan your own festivities, don’t forget to go through your holiday health checklist and get yourself ready. Here are some suggestions for your own checklist:
 
- Set up an appointment to touch base with your doctor now or in the new year.
- Follow up regarding any prior authorization or new prescriptions you may need for the beginning of the new year.
- Make sure you have enough medicine at hand, especially in case of bad weather.
- Order your medications with ample time since some pharmacies, doctors’ offices and insurance companies have limited hours during the holidays.
- If you’re changing insurance or anticipate changes, sign up or re-register for any assistance and co-pay programs, like Patient Services (PSI), The Assistance Fund (TAF), as well as with the manufacturer.
- Join an HAEA virtual support group to manage any holiday stress.
 
The holidays can be overwhelming, but being prepared ahead of time will help you reduce stress and allow you to enjoy the holidays with your loved ones.


For more information, or if you wish to speak with an HAEA Health Advocate, click here! 

 


Pam King HAEA Scholarship Program Reception 2018

HAEA Scholarship Recipients pay tribute to Pam King during 1st Annual Benefit Event

Scholarship recipients, patients, industry partners, HAEA staff, and guests came together in Providence last month to pay tribute to Pam King and the realization of her dream to establish a Scholarship Program for HAE patients. Throughout her career in the worlds of pharmaceutical industry and patient advocacy, Pam inspired many with her heartfelt dedication to helping people with serious medical conditions lead a better life, and provided young patients the opportunity to overcome obstacles, and fulfill their educational goals and aspirations. Guests and members of Pam’s family, among the attendees, heard scholarship recipients share their powerful stories of how they are overcoming personal challenges and focusing on their future, thanks to Pam’s lasting belief in their potential.


To support the Pam King HAEA Scholarship Program and transform the lives of HAE patients, visit here! 

 


Open Enrollment 2019
 
2019 Open Enrollment for Health Insurance Starts this 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, visit the HAEA Café to watch the exclusive webinar: A Guide to the Health Insurance Marketplace with HAEA Health Advocate, Troyce Venturella here! 

 


Support Groups

Don’t Let the Holiday Blues Get You Down

The holidays can sometimes get you down, but you’re not alone. Join other HAE patients, caregivers, and family members as they share their day-to-day life experiences. A virtual 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 7:30 PM (youth only)
- Wednesday 7:30 PM
- Thursday 11 AM (mostly parent caregivers)
- Thursday 7:30 PM
 


HAE Youth Advocacy Month

Youth Stand Up Strong for HAE Advocacy

Congratulations to all the kids and teens who participated in the first annual HAE Youth Advocacy Month. Their willingness to help raise HAE awareness and educate others in their community made an important impact on the care of patients everywhere. The HAEA is proud of the contributions of all of our youth! So many of you planned and held events, ordered ER Tool Kits to distribute in your community, joined us for an HAE IN-MOTION® 5k, and raised awareness in your schools.
 
If you are a youngster between the ages of 5 and 26 who has participated in, or led efforts to raise awareness about HAE this year, you qualify to receive a FREE GIVEAWAY in the mail. Send us a brief description of how you helped raise HAE awareness and a photo of you in action, and we will send you either a Bluetooth Speaker or a Popsocket Phone Stand. IT'S THAT EASY!

Send your email to Lisa Facciolla here!



Brady Club Story

Brady Club just for Kids!

The HAEA Brady Club is a fun online platform designed for young HAE patients and their family members (ages 5-12). We invite our younger community members to log-in and visit the Submit Your Story section. Kids receive a FREE Super Brady T-shirt in the mail when they complete the storybook section and upload a photo. Stop by the KIDS CORNER to submit a question to HAE expert Dr. C at the US HAEA Hereditary Angioedema Center, and your question may be answered in the next edition of the Brady Club Activity Book.


 


Pam King HAEA Scholarship Program

Pam King HAEA Scholarship Program to Announce Spring Recipient Award Winners this month! 

Each semester, the HAEA recognizes and supports patients who are seeking to improve their lives through academic achievement. The HAEA would like to thank all of the outstanding college students who have applied for scholarships for the Spring 2019 semester. We look forward to sending out award notifications on November 9, 2018.


To support the Pam King HAEA Scholarship Program click here! 

 


Scientific Registry Report

Help Advance HAE Research!

Advance HAE Scientific Registry members: It’s never too late to submit your Quarterly Report! Check your email for your 4-week reminder for your Q3 Report, or go now to https://sr.haea.org to access your Report! Every time you send in a report, you contribute to a greater understanding of how HAE affects all of our lives. Together, we can Advance HAE research!


Register to the Scientific Registry here! 

 
 


Season of Giving
 
Tis’ the Season for Giving!

This holiday season, please consider supporting the HAEA's commitment to improve the lives of HAE patients through our numerous programs. Every act of generosity counts, and each means even more when we give TOGETHER!
 
100% of every dollar donated to the HAEA by individuals is allocated to one of our three major programs:
- Pam King HAEA Scholarship Program – provides financial support for HAE patients who are entering or attending college and seeking to improve their lives through academic achievement.
- HAEA Compassion Fund - offers financial assistance for patients in need who must travel to see an HAE medical specialist.
- HAE Research – supports expert researchers in their efforts to solve the remaining scientific mysteries of HAE.
 
HERE’S HOW YOU CAN HELP
1. Visit the HAEA webpage and make a charitable donation directly, at https://www.haea.org/donate.php.
2. Make your HOLIDAY purchases through Amazon Smile, and select the HAEA as your charitable organization! Amazon will then donate 0.5% of the price of your eligible purchases to the HAEA. Go to smile.amazon.com TODAY, on Black Friday or Cyber Monday, and start giving back!
3. Sign up to the HAEA Giving Program to set-up a regular contribution to the HAEA! Contact Mike Mallory for more information at mikemallory@haea.org.
 
When you make your gift, you can designate your gift to one specific program. Or, if you make an unrestricted gift, the HAEA will designate your donation to go to where our community’s need is the greatest.
 


Giving Campaign

You can make a difference in the lives of HAE patients

Each year hundreds of people across the nation demonstrate their great spirit of generosity by participating in the HAEA Giving Campaign. Every contribution, whatever the amount, has a significant impact on our rare disease community. Every dollar donated is more than a gift; it is an opportunity to transform someone’s life. Join others in establishing a recurring contribution that will make a difference in the lives of HAE patients today. Your monthly support is greatly appreciated!
 
- $25 - helps provide ER Tool Kits to school nurses and local emergency care facilities.
- $50 - helps support HAE awareness programs in local communities.
- $100 - helps educate medical staff across the country, through HAE specialized Continued Medical Education (CME) programs
- $250 - supports the HAEA’s Brady Club that helps the youngest HAE patients to better understand, manage, and cope with their disease while offering fun ways for them to feel inspired, empowered, and connected to other kids.
- $500 - supports expert researchers in their efforts to solve the remaining scientific mysteries of HAE through the US HAEA Angioedema Center at UCSD.
- $1,000 - supports the HAEA Compassion fund that offers financial assistance for patients in need who wish to travel to see an HAEA Angioedema Center medical specialist.
-$2,500 - provides financial aid through the Pam King HAEA Scholarship Program to HAE patients entering or attending college.
 
For more information on how you can pledge a regular donation to one of these programs, or to set up a payroll deduction through your employer, please contact HAEA Patient Advocate, Mike Mallory at (513) 858-9370 or via email at mikemallory@haea.org.
 


HAEA Youth Webinar
 
HAEA Youth Edition Webinar: How to tell people about HAE?

Sometimes it can be hard to tell others about HAE. It's important to be able to tell people about your condition with confidence. Join us for this special Youth Edition webinar and hear from other young patients about the strategies they use when telling others about HAE. We hope that you'll walk away from this webinar feeling more confident telling others about your condition.
 
Phone: +1 669 900 6833 (Webinar ID: 581 293 681)
Special Guest Youth Speakers
 


Upcoming Events


5K PHOTO 1

HAE IN-MOTION® event: Saturday, November 10th - Mohawk Park, Tulsa, Oklahoma

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




HAEA Meet & Greet Kansas City

For more information, please contact HAEA Patient Advocate, Mike Mallory Here!




Finished!


HAE IN-MOTION® event: Saturday, November 17th - Brushy Creek Lake Park, Cedar Park, Texas!

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

If you would like to plan an HAE awareness event in your area, 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 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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