Primary Immune Tribune
September 2016


The Time is Now – Walk for PI!
IDF Walk for Primary Immunodeficiency 2016

IDF Walk for Primary Immunodeficiency 2016 has officially begun with our two IDF Community Walks in Blountville, TN and Omaha, NE, as well as our first National Walk site in Cleveland, OH. If you haven’t created a walk team and begun your fundraising, the time is now to take your first steps and Walk for PI

Dollars raised through the walks fund IDF educational programs and resources, support IDF advocacy campaigns for patients, and power critical patient-focused research.

Beyond the dollars, the walks also unite the primary immunodeficiency (PI) community to spread awareness and to promote early diagnosis and proper treatment. You can join us and help create a better future for people living with PI!

Your efforts matter because your efforts will change lives.

Already registered? Great! Thank you for joining thousands of individuals in the fight against PI. We’re asking all walk participants to change their profile picture on social media to get the word out about IDF Walk for PI. 

  1. Click on the image below. 
  2. Save the image to your phone, tablet or computer. 
  3. Then go to your favorite social media platform and change your profile pic to this image!

We encourage you to share posts from the IDF Walk for PI Facebook page to inform your network about the walk and to educate more and more people about these rare, chronic diseases. Use hashtags #walkforPI #zebrastrong #thinkzebra!

Thanks again for supporting IDF Walk for PI! Hope to see you on the road!

Questions? Contact IDF: walk@primaryimmune.org

 

Click FULL STORY to see where IDF Walk for PI will be held this year!


[FULL STORY]


Nasal Spray Influenza Vaccine Not Recommended for the Upcoming Flu Season
Updated Flu Information for 2016-2017

For the 2016-2017 Flu Season, IDF has published recommendations for patients with PI and their families, including prevention, vaccination and creating a family plan.

This season, the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices (ACIP) has recommended that the nasal spray influenza vaccine not be used.

Click here to read IDF's 2016-2017 Flu information.



Promoting Lifesaving Plasma Donations
International Plasma Awareness Week 2016, October 9-15

To raise global awareness about plasma donation, the Plasma Protein Therapeutics Association (PPTA) and its member companies are sponsoring the fourth annual International Plasma Awareness Week (IPAW), October 9-15. Fortunately, many people with PI can lead normal lives thanks to immunoglobulin replacement therapy that is created from human plasma.

IPAW recognizes the contributions of plasma donors in saving and improving lives, and helps increase understanding about lifesaving plasma protein therapies and rare diseases. PPTA member companies have planned a variety of activities at plasma collection facilities in the U.S. and Europe.

IDF encourages our community to promote awareness of plasma donation during this week, including sharing infographics such as the one at left. Visit www.donatingplasma.org for more info and use #IPAW_2016 on social media.



Your Support Changes Lives

Did you know that IDF received over 6,600 requests from patients and families last year alone? Many were desperate to locate a specialist, find information about their rare disease, ask an insurance question or simply connect with someone going through similar experiences. Individuals and families living with PI can count on IDF. 

Will you commit to making a difference for people living with PI? Will you make a donation to IDF this year, ensuring that many more will receive the resources they need and richly deserve for generations to come? 
 
Your support changes lives. Please click here to make your donation now.



Since You Asked
Question & Answer

Question: I have lost some of my hair (all over my body) from IVIG. Do you think switching from IVIG to SCIG will help my hair to regrow?

Question: What suggestions do you have for fatigue associated with CVID?

Click FULL STORY to see the answer to these questions.


[FULL STORY]


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


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