Primary Immune Tribune
November 2015
IDF Earns Highest 4-Star Rating from Charity Navigator for Third Consecutive Year
IDF Outperforms Most Other Charities in America

For the third consecutive year, the Immune Deficiency Foundation (IDF) has been awarded a 4-Star Rating from Charity Navigator, America’s largest independent charity evaluator. This top distinction is awarded for sound fiscal management practices and commitment to accountability and transparency.

Receiving four out of a possible four stars indicates that an organization adheres to good governance and other best practices that minimize the chance of unethical activities and that it consistently executes its mission in a fiscally responsible way. According to Charity Navigator, only 14% of the charities they rate have received at least three consecutive 4-star evaluations, indicating that IDF outperforms most other charities in America.


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New Quality of Life Survey Available on IDF ePHR
Help Lead Healthcare Providers with Patient Power

The Immune Deficiency Foundation (IDF) has launched the PROMIS-29 quality of life survey on www.idfephr.org. Don’t miss this important and easy opportunity to participate in research. Currently, there is a lack of patient reported outcomes in primary immunodeficiency disease research, and this survey helps to fill that gap. Designed for patients 18 years of age or older, the survey will be open for 30 days, closed, and then re-opened again in 6 months. This will enable you to see if your health improves or worsens in that 6 month span.


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NEW Publication Available
IDF Clinical Focus on Primary Immunodeficiencies: Diagnostic Approaches to Antibody Deficiencies

The Immune Deficiency Foundation (IDF) is pleased to present the new edition of Immune Deficiency Foundation Clinical Focus on Primary Immunodeficiencies: Diagnostic Approaches to Antibody Deficiencies.

The majority of patients diagnosed with a primary immunodeficiency disease will be found to have defective antibody production and/or function. Currently there are many questions regarding diagnostic approaches for antibody deficiencies. When an immunodeficiency is suspected, there are a number of laboratory tools that can be used diagnostically to help determine a diagnosis. This Clinical Focus is dedicated specifically to the diagnosis of patients who have antibody defects as their primary feature.


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Your Support Matters
Make Your Annual Gift to IDF by December 31

IDF is proud to serve to those who live with primary immunodeficiency, but we need your help! A patient’s journey does not stop at diagnosis, so we provide resources for the PI community throughout their lives and advocate on their behalf to ensure they have access to the best care possible. More and more people are discovering IDF, and the demand for our programs and services increases each day.

Please consider making an online gift to IDF by December 31. Your contribution to IDF is more critical than ever—and when it comes to helping us help the PI community, your support matters.


Fundraising Continues as IDF Walk for PI Season Wraps Up
Easy Ways to Raise More before the Holidays

Thank you again for your support of the 2015 IDF Walk for Primary Immunodeficiency. Currently, our walkers from all Walk for PI sites have raised over $400,000, and combined with the generous support of our sponsors, we have raised over $900,000. We need your help to keep the momentum going to reach our goal! Your support is more important now than ever to ensure that IDF can provide vital support to the PI community.

Remember you can continue to fundraise until December 31! So with the holiday season approaching, this is a fantastic opportunity to host some fun events to continue to raise funds for your walk team.

  • Everyone needs to eat! Host a Dine-Out Night at a local chain restaurant. As friends and family get busy shopping for others, invite them for a quick bite to catch up while raising funds.
  • Host a gift-wrapping party. Invite everyone to drop off their holiday presents for you and your family to wrap. Ask for a donation to IDF for your time-saving idea!

Click here for more tips – the possibilities are endless!



Shop Amazon and IDF Receives a Portion of the Sale
Put Your Shopping to Good Use for IDF

If you shop through AmazonSmile and select the Immune Deficiency Foundation, Amazon donates 0.5% of the price of your eligible AmazonSmile purchases to IDF. You can shop all year long through Amazon Smile—not just around the holidays. Go to https://smile.amazon.com/ch/52-1214782, and log in (or create an Amazon account). Happy shopping!



PI CONNECT Research Forum Webinar
Recording Now Available

Thank you to everyone who participated in the IDF PI CONNECT Research Forum Webinar: Body Temperature and Fever Response. If you missed the live session, don’t worry!

We now have a recorded version available in the PI CONNECT Research Forum. Simply login to www.idfpiconnect.org, and click on the "Webinars/Videos" link at the top of the page to access the full webinar.


Health Insurance and Primary Immunodeficiency Survey
Your Feedback Is Essential

In a few weeks all people with PI and parents of patients will receive an e-mail invitation from IDF to participate in a survey project that is vital to our community. This survey is the second in a groundbreaking three-year survey project.

The Patient Protection and Affordable Care Act (ACA) was signed into law in March 2010. The goal of the law is to make healthcare more affordable and accessible for millions of Americans who either do not have access to or cannot afford health insurance.

Recent history suggests that even small changes to how healthcare services are covered, reimbursed or distributed can have profound impact on individuals with PI. Changes to the U.S. healthcare insurance system as a result of the ACA will be far-reaching, and IDF is concerned that some of these changes may create problems for patients.


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Join Us in Boston & Salt Lake City for the 2016 IDF Retreats
Registration Begins in March 2016

IDF Retreats are weekend gatherings designed with everyone in the primary immunodeficiency community in mind—including you! We invite you to join us in 2016:

Boston, MA
June 17-19, 2016
Boston Marriott Newton

Salt Lake City, UT
August 19-21, 2016
Sheraton Salt Lake City Hotel

Patients, parents, siblings, children and partners are encouraged to attend and learn how to develop better approaches to living with primary immunodeficiency. Plus, you can connect with others going through similar experiences, discover new resources and have some fun.

Registration will begin in March 2016. Stay tuned for more details!


Since You Asked
IDF Question and Answer

Q: It is open enrollment, and my employer is offering new plans this year. My current plan covers my immunoglobulin treatments at a very affordable price for me. I want to have the same type of coverage. How do I know which plan will be the best for me?

Q: I had severe body aches and fatigue after my IVIG so my doctor switched to a different product. Now the body aches and fatigue have decreased, but I am getting severe stomach cramping for several days after my infusions. My doctor is not sure what product to try next. Can IDF help us determine which product is the best for minimal side effects?

Click FULL STORY to see the answer to these questions.


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