Primary Immune Tribune
January 2017
Advocating for Continued Access to Care

IDF has been very busy on the public policy front advocating to ensure that people with primary immunodeficiency diseases (PI) have access to the medication and treatments they need to live healthy lives. These issues are critical to the PI community, and we will be contacting you periodically about reaching out to the administration and to your representatives in Congress to ensure people are able to continue to receive the care they need. The following recent federal actions have brought an urgency to these matters.

Congress: Don’t Repeal without Replacing the ACA

Congress is working right now to develop legislation that will replace the Affordable Care Act (ACA). It is imperative to let your Representatives and Senators know that they must not repeal the ACA without an immediate plan to ensure that people keep the protections they currently have. No matter your political views, changes to the ACA can affect everyone, and we want to make sure our community is protected. 

Click FULL STORY to learn how this impacts our community and what you can do.

Saving SCIG on Medicare

In December, Congress passed and the President signed into law the 21st Century Cures Act. This bill will bring healthcare innovation infrastructure into the 21st Century, providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments. While this bill will do many positive things for those with rare, chronic diseases, one part of the law may have a negative effect on people with PI who receive subcutaneous immunoglobulin therapy (SCIG) and are on Medicare.

Click FULL STORY to read more and understand the issue.


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Coming Soon
Registration for the IDF 2017 National Conference

 

IDF 2017 National Conference

June 15-17, 2017

Anaheim Marriott

Registration begins soon!

Follow IDF on social media to find out when registration is live: 

FacebookTwitter @IDFCommunityInstagram @IDFCommunity – LinkedIn

#IDF2017NC



A Heartfelt Thank You to Our Donors
Your Generosity Changed Thousands of Lives in 2016

As we look back at 2016, we acknowledge the incredible support of those who donated to IDF. Our donors make the work of IDF possible—every resource, every program and every initiative that ultimately helps individuals and families living with PI. On behalf of the IDF community, we thank our generous donors for their philanthropic support in 2016.



Together, We Can Change the Future
A Message from TZ the IDF Zebra

IDF Walk for Primary Immunodeficiency 2016 was one for the books! Last year, I traveled to 12 cities and joined 4,000 participants on more than 400 teams in uniting against PI. With the help of more than 300 volunteers, 2 community walks and our sponsors, we were able to build an even stronger community and raise more than $1.1 million!

Our combined efforts make it possible to fund critical programs and resources for the PI community.

Did you know that because of IDF Walk for PI we were able to establish the IDF Research Grant? This program is fully funded by dollars raised through IDF Walk for PI. In fact, this past fall we awarded the first grant to Sonia Sharma, PhD of La Jolla Institute for Allergy and Immunology to help support clinical research of PI. A second round of grants will be awarded in the first half of 2017.

Together, we are making a difference. Together, we can change the future for people with PI.

It’s always an honor to meet members of the PI community around the country. I look forward to seeing you in 2017! Don’t forget to follow me, TZ the IDF Zebra, on Instagram and Twitter.

Learn more about IDF Walk for PI at:
www.walkforPI.org



It's Your Year to Get Involved
Many Volunteer Opportunities Available to Suit You

Sign-up today to join the IDF Volunteer Network! We’re looking for more awesome volunteers to help make a difference in the lives of those living with PI.

Whether you are interested in providing support to individuals and families or you want to join the movement to spread awareness of PI, we have a spot waiting for you! For more information on how you can get involved, visit: www.primaryimmune.org/volunteer

Questions? Contact us at volunteer@primaryimmune.org or 800-296-4433



IDF Research Grant Deadline Extended

The deadline to apply for the IDF Research Grant has been extended to February 22, 2017.

This seed grant program was created to encourage and support patient oriented research on primary immunodeficiency diseases, and it is open to applicants currently based in the U.S. The program will consist of one-year grants with an award value of: $25,000 – $50,000 (a somewhat higher level of support is available for a few exceptional proposals).

To learn more, visit: www.primaryimmune.org/idf-research-grant-program.



Since You Asked
Question & Answer

Question: My daughter has Common Variable Immune Deficiency (CVID) and has not been doing well lately as we just discovered she has rheumatoid arthritis as well. Appointments, treatment, insurance and coordinating her care feels overwhelming. I wish I could handle this better! How do other parents navigate this caregiver process?

Question: My mom has CVID and just started going to a new facility for her infusions. At her old facility, they scheduled her blood test 5 to 7 days before her infusion. The new one is scheduling her blood test less than an hour before her infusion. Will this cause any extra side effects or problems for her? She has had so many problems—I would rather her not have to suffer more side effects if it's not necessary. 

Click FULL STORY for answers to these questions.


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IDF Calendar of Events

IDF Education Meeting

Dallas, TX – February 18

 

IDF Get Connected Groups

Arvada, CO – February 4

St. Louis, MO – February 4

Johnson City, TN – February 4

Amarillo, TX – February 4

Bonita Springs, FL – February 7

Charlotte, NC – February 8

 

Save the Date: IDF Teen Escapes 2017

Dallas, TX: July 15-16

West Harrison, NY: July 29-30

 

For a complete list of IDF events, go to: www.primaryimmune.org/events-calendar.



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Primary Immune Tribune is sponsored by an educational grant from Grifols.

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