Primary Immune Tribune
May 2016
Mark Your Calendar

IDF Events in June

IDF Retreat
Boston, MA – June 17-19

IDF Get Connected Groups
Murray, UT - June 4 
Ft. Lauderdale, FL – June 11
Portland, OR - June 11
Naples, FL – June 21

IDF Education Meeting
Dallas, TX – June 11

 

Upcoming Events

IDF Retreat
Salt Lake City - August 19-21

IDF Teen Escapes
Chicago, IL (Northbrook) - July 16-17
Charlotte, NC - July 30-31

IDF Walk for Primary Immunodeficiency
Create Your Team Today!
First National Walk, September 25

IDF 2017 National Conference
Anaheim, CA - June 15-17, 2017

 



Join Us for the IDF Retreat 2016 in Salt Lake City
A Memorable Weekend for All

The Immune Deficiency Foundation (IDF) is coming to Salt Lake City this summer, and you won't want to miss it! Join us for the IDF Retreat 2016 in Salt Lake City, August 19-21. This is a weekend gathering designed with everyone in the primary immunodeficiency (PI) community in mind—including you!

 

Salt Lake City
August 19-21, 2016

What's Planned for the Retreat
Patients, parents, siblings, children and partners are encouraged to attend and learn how to develop better approaches to living with PI. Plus, you can connect with others going through similar experiences and have some fun!


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Quality of Life Survey Ends May 31
Take the Survey at www.IDFePHR.org

The second round of the PROMIS-29 quality of life survey is live on www.IDFePHR.org until May 31 and will then close until the next survey is offered in October. The survey measures physical, mental, and social health, and it can be used for many chronic conditions. IDF has upgraded the survey from the first round, so now it provides participants with instant customized reports of how their health compares to the general population. This information can be used as a way to better manage your health and help healthcare providers better guide your care.

Also for the first time, there is a children’s survey, which assesses a child's overall evaluations of his or her physical, mental, and social health. The PROMIS Pediatric Global Health item bank (PGH-7) is similar to its PROMIS adult counterpart; however, it is intended for youth, ages 8-17.

To participate in the PROMIS-29 and/or the PGH-7 surveys, sign in to www.IDFePHR.org, click on "Health Tools" and then "Surveys" in the top navigation links to participate. 

If you have any questions regarding this upcoming study, please contact IDF at 800-296-4433 or info@idfephr.org.



Double Your Donation to IDF
Enroll in a Matching Gift Program

Many companies offer matching gift programs to encourage employees to contribute to charitable organizations. Some even provide matching funds to support employee volunteer hours. Most of these programs match contributions dollar for dollar, and some will even double or triple the amount of your gift.

To find out if your company will match gifts to IDF, 
please click here.

Next, please get in touch with your human resources department to fill out any required forms. Don’t miss this opportunity to make the most of your gift to IDF!



Young Zebra Inspired by IDF Walk for PI
Remembers to Be Brave Like His Walk Friends

“Ben left the walk raving about how amazing it was, and even months later he is still talking about it,” explains mom Kim Everett about her son’s experience at IDF Walk for Primary Immunodeficiency Los Angeles in 2015. At just 3-years-old, his first walk has truly impacted his outlook on life. Kim shared Ben’s story in a recent post on the IDF Blog.

She says, “Whenever Ben is having a tough day, he puts on his Team Ben shirt from the walk. He has been admitted to the hospital a few times this year and is currently getting weekly IV's at home. He has been struggling emotionally with his PI, but all he has been talking about these days are his friends with PI from the ‘Zebra Party’ and how he has to be brave just like them. Our friends and family who walked with us are still talking about the impact that IDF Walk for PI had on them and how it allowed them to be able to see Ben in his element while supporting him.”

Ben’s story shows what an impact the walks can have. You have the power to make a difference in the lives of people living with PI, like Ben.

By creating a walk team, you can help fund critical IDF programs while spending quality time with your loved ones and the PI community. Show that you care about those living with PI and walk with IDF. For more information, visit www.walkforPI.org.

Click here to read Ben’s full story on the IDF Blog.

IDF Walk for Primary Immunodeficiency is made possible by National Presenting Sponsor Baxalta Incorporated and National Sponsors Coram CVS | Specialty Infusion Services, CSL Behring, Grifols, Horizon Pharma, IgG America | ASD Healthcare | US Bioservices, Kedrion Biopharma, Octapharma, and Option Care.



Weekends Designed for Teens with PI
IDF Teen Escapes 2016: Chicago, IL & Charlotte, NC

Would it help your teen to meet others with primary immunodeficiency and make some great memories along the way? Then register for an IDF Teen Escape!

Chicago, IL (Northbrook)
July 16-17, 2016
Renaissance Chicago North Shore Hotel

Charlotte, NC
July 30-31, 2016
Sheraton Charlotte Airport Hotel

IDF Teen Escape, a program of the Immune Deficiency Foundation, is a weekend getaway exclusively for teens, ages 12-18, who have been diagnosed with primary immunodeficiency diseases (PI). 


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Calling Volunteers:
Join the IDF Outreach Initiative

We’re calling on volunteers to be a part of the IDF Outreach Initiative! You can help get vital IDF resources into the hands of people with primary immunodeficiency diseases (PI) as an IDF Liaison, or you can help increase connections between individuals and families living with PI in their local communities as an IDF Get Connected Leader. No matter what opportunity you choose, you will make a difference!

IDF Liaisons are volunteers trained to build relationships with healthcare professionals who care for individuals diagnosed with PI and to encourage them to discuss IDF with their patients and distribute IDF materials.

Volunteers can serve as IDF Get Connected Leaders to plan, organize and attend in-person networking opportunities designed to bring together individuals from the PI community in their local area.

To learn more about these amazing volunteer opportunities, visit www.primaryimmune.org/volunteer.

Questions? Contact IDF: 800-296-4433 or volunteer@primaryimmune.org.

The IDF Outreach Initiative is supported by Lead Sponsor Baxalta Incorporated.



Congress Hears the PI Community
Successful 2016 IDF Advocacy Day

The 2016 IDF Advocacy Day was a huge success! On Thursday, April 21, over 75 members of the primary immunodeficiency (PI) community made their way to Capitol Hill in Washington, DC to advocate on behalf of those with PI and encourage their legislators to oppose CMS proposed Medicare Part B Drug Payment Model, which could potentially put lifesaving medications such as immunoglobulin therapy (Ig) out of reach for many patients.  


IDF Advocacy Day, April 21, 2016, Washington, DC

It was invigorating to see advocates join us from across the U.S., representing more than 35 states and ranging in age from 15-75, all with diverse professional backgrounds including physicians, attorneys, teachers and more. In total, these dedicated advocates attended over 160 meetings, putting a face to the cause and emphasizing the unique healthcare needs of the PI community. 

Stay tuned for IDF posts on Facebook and Twitter as well as IDF Action Alerts to help stop this payment model from moving forward. Click here to sign up for IDF Action Alerts. 



Since You Asked
Question & Answer

Question: I receive IVIG every 2 weeks, and since I do not make any IgA at all my doctor has indicated that I must use a specific brand of product.

I am due to have outpatient surgery soon and am worried that if I end up having to be admitted for inpatient surgery that the hospital will refuse to provide me with my product for IVIG. I have been hospitalized in the past, and the doctors at these hospitals always state that the hospital pharmacy does NOT carry my specific brand. What can I do?

Question: I have a new insurance plan which dictates that I use a certain specialty pharmacy. This pharmacy will not provide me with my prescribed product and suggested that I use a different product. I decided to use a different pharmacy, but now I am paying all of these out-of-network charges and there is no limit on the annual the out-of-pocket maximum. This does not seem fair! What can I do?

Click FULL STORY to see the answer to these questions.

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Primary Immune Tribune is sponsored by an educational grant from Grifols


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