Primary Immune Tribune
October 2015
IDF Flu Information for 2015-2016

For the 2015-2016 Flu Season, the Immune Deficiency Foundation (IDF) has published recommendations for patients with primary immunodeficiency diseases (PI) and their families, including prevention, vaccination and creating a family plan.

CLICK HERE to read IDF's 2015-2016 Flu information.



Take Part in the Next IDF Research Webinar
Body Temperature & Fever Response - Oct. 29 at 8 PM ET

Itís not too late to register for the next PI CONNECT Research Webinar and join the research conversation! The topic will be Body Temperature and Fever Response, and it will be held Thursday, October 29, 8 PM ET. This webinar is exclusively available to PI CONNECT Research Forum users, so be sure to log in to the forum and register for the webinar. Please note: you must have an IDF ePHR account and have consented into PI CONNECT in order to register for this PI CONNECT Research Webinar. Once consented, you receive access to the Research Forum where the webinar registration info is posted.

How to Register:

  1. Log in to the PI CONNECT Research Forum.
  2. You will see a section on the right hand side under the Welcome section titled Register for Research Webinar.
  3. Select "Click here to register."
  4. You will be directed to IDF's WebEx page. 
  5. Click Register. (Next to Event Status)
  6. Complete the registration form.

If you have questions, please contact us at info@idfephr.org.


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Strong Zebra Spirit at Walk for PI Continues!
Funds Can Be Raised until December 31

The 2015 season of IDF Walk of Primary Immunodeficiency has officially kicked off!

On October 4, IDF hosted walks in Boston at Boston Common and a first year site Cleveland at Wade Oval. Rain was threatening to squash our strong zebra spirit, but it held off and fantastic events were had! The following weekend Walk for PI continued to another first year site Minneapolis, where an excited group came together to walk at Minnehaha Park. On October 18, familiar faces and many new teams gathered in third-year site Philadelphia at Pennís Landing. And it was a super Sunday for hundreds of walkers on October 25 at two of our sitesóGreater Chicago and New York!


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Your Support Matters
Make Your Annual Gift to IDF

IDF is proud to serve to those who live with primary immunodeficiency, but we need your help! A patientís 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.

Consider making a gift to IDF. You can donate online at www.primaryimmune.org/appeal. Your contribution to IDF is more critical than everóyour support matters.



Time to Re-enroll for Health Insurance

Itís re-enrollment time for many health insurance plans, including plans offered through the federal health insurance marketplaces. Now is the time to review your current coverage, whether itís through the marketplaces or through your employer, and make sure itís the right healthcare plan for you and your family. You can download the IDF Health Insurance Toolkit, complete with updated information, tips and worksheets. You can also watch the video "Things to Consider When Choosing a Health Plan," for help in making the best possible choice in selecting a private health insurance plan. For additional information visit the IDF Patient Insurance Center.

For plans from federal health insurance marketplaces, starting November 1, you can update your information and compare your current plan with other plans that are available in your area. The open enrollment period runs from November 1 through January 31, 2016. Individuals may qualify for Special Enrollment Periods allowing them to enroll outside of Open Enrollment if they have certain life events, like getting married, having a baby, or losing other coverage.

Visit www.healthcare.gov for more information about the health insurance marketplaces.


New Quality of Life Survey
How Does Your Health Compare to the General Population?

IDF will soon make the PROMIS-29 quality of life survey available to the PI community. PROMIS, which stands for Patient-Reported Outcomes Measurement Information System, was developed to support NIH-funded research. The systemís measures cover physical, mental, and social health and can be used for many chronic conditions.

Using short questionnaires, the PROMIS-29 assesses seven health categories: Physical Function, Pain Interference, Fatigue, Depression, Anxiety, Sleep Disturbance, and Ability to Participate in Social Roles.

In conjunction with the survey, IDF has developed a special reporting feature for individuals with PI. It will provide survey participants with 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.

The PROMIS-29 survey will be posted on IDF ePHR, so be sure to set up an account at www.idfephr.org to be ready for the live launch date.

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


Save the Date for 2016 IDF Retreats: Boston & Salt Lake City

IDF Retreats are weekend gatherings designed with everyone in the primary immunodeficiency community in mindóincluding you! The dates and locations for the 2016 IDF Retreats have been set:

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 and have some fun.

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


Since You Asked
IDF Question and Answer

Q: I am 34 years old and have been recently diagnosed with Common Variable Immune Deficiency (CVID). I just started IVIG treatments. What is my life expectancy?

Q: Itís that time of year - flu season! I have CVID and would like to know if there is anything new that I need to know about with this yearís vaccine?

Click FULL STORY to see the answer to these questions.


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