Please take a minute and read our newsletter to find out what is happening in the PI Community across Canada.

Thank you for your interest in our newsletter. Please take a minute to read about all the exciting news taking place in the primary immunodeficiency community across Canada. 

Please remember to let us know about any changes to addresses or email, so that you can continue to receive news about the PI community around Canada.

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Letter from our Chair
Hello CIPO members,

I hope your summer is relaxing and rejuvenating. CIPO will be spending the summer planning for fall events and future events in 2020.

CIPO held 2 successful Education Days last month in New Brunswick and Vancouver.
We had positive feedback from patients who were pleased to meet other patients and share experiences.

While at the IDF conference we were warned that the PI community needs to be very vigilant about the availability of plasma. Plasma use has increased remarkably in the last several years and there have been shortages in several countries. At CIPO we have been working to protect accessibility and availability to plasma products in Canada. We know the current shortages have been a scary time for some of you please know that we are here for you.

I would like to say thank you to CIPO's staff, Whitney Goulstone, Erin Harder for all their work and dedication to CIPO, and especially Anna Riley as she leaves us to have her first baby. We wish her the best of luck and can't wait until she's back again. Also to CIPO board members Christine Duncan, Martine Allard, Elizabeth Doherty and Alex Blake for ensuring CIPO continues to address issues and support patients with P.I.

Wendy Chandler
National Chair
Director for B.C.
CIPO has been working with CBS and treaters during the ongoing shortage of Cuvitru and supply shortages in certain Gammaguard Liquid vial sizes. We will keep our membership updated on an ongoing basis. Please refer to our last  update

CBS Open Board Meeting

CIPO Executive Director, Whitney Goulstone, addressed the Canadian Blood Services board and executive management team at their most recent open board meeting in Toronto, June 27, to address the SCIG shortage and other issues affecting the PI patient population. Read Whitney's statement.


A Rare International Dialogue' was a great forum for discussion on recent research and an excellent opportunity for CIPO to learn about the wider community of rare disease patient groups.  A multitude of speakers addressed the many pressing concerns within the niche sector of rare disease health care and patient support. Upon conclusion of the conference, CIPO was able to leave feeling confident that continued awareness and efforts will be placed into uniting Primary Immunodeficiency services providers with the wider rare disease community.

Christine Duncan and Wendy Chandler attended the Immune Deficiency Foundation's 10 th bi-annual conference in Washington D.C. June 20-22. The dress code was zebra striped clothing and accessories, so we were all quite identifiable.

Doctors, nurses and healthcare professionals who are experts in their field presented workshops. Fatigue, pain, gut issues, lung issues, bacterial infections, enlarged nymph nodes, Rhinosinusitius (the new term for Sinusitis), were all being discussed.  

 It was a whirlwind of planes, large conference rooms, workshops and sleep deprivation with over 1200 delegates, but what an opportunity to network and share stories with others.


APIQ Education Day/AGM
September 28, Sandman Hotel, Longueil

CIPO's Quebec chapter, APIQ's annual education day promises to be as full as ever! With an expert panel, and a look at PI in the older person. Register today at

Ontario Education Day/AGM 
October 5, Oakham House, Toronto 

Join CIPO's Ontario Chapter for a great day of talks, including "Cancer and Immunodeficiency" and "Learning about Antibiotic Use". There will be time to meet and talk with others whose lives are affected by PI. Register today

Manitoba/SK Education Day
October 26, Sandman Hotel, Winnipeg

Help CIPO Manitoba celebrate 10 years of SCIG in Canada! This is planned to be a wonderful day filled with speakers from different specialties. This is one not to miss!

Past Events

BC Education Day
June 1, Firefighters Hall, Burnaby

BC's education Day did not disappoint with a patient panel discussing travel with PI, and some great workshops into the afternoon. See you all again next Spring!

Atlantic Education Day
Delta Hotel Beausejour, Moncton

The Atlantic Chapter held their first ever event in New Brunswick. It proved to be a great day with talks from Dr. Andrew O'Keefe on PI and Dr. Sylvain Grenier from Canadian Blood Services. We have a lot to look forward and cannot wait to see this Chapter grow!

CIPO is offering peer support coach training September 28th in Vancouver. This training session is open to members currently residing in BC and Alberta. We are very excited to have this group of new coaches join our peer coaching team!  If you are interested in becoming a peer support coach, please send an email to

A peer support coach provides understanding and hope on a one-to-one basis to individuals diagnosed with PI and their family members.

CIPO monthly meet ups (formerly known as support groups) are set to get up and running again this fall.   Please be sure to mark your calendar - we will be meeting on the third Tuesday of each month. Locations and times will be listed on the CIPO website, on our Facebook page, and in some of the clinics in your city.  We are always interested in hearing your ideas for discussion topics, so please do reach out to us if you have a suggestion! 

Please note, there will not be meet ups in December, or over the summer months.
Life of PI 

After the success of our Life of PI social media campaign that we have decided to continue with our campaign and hope to broaden our search to include not only our members but also any  family members and  health care providers who would like to be involved and share their stories and help to bring more attention and understanding to the wider population.

In case you missed it,  Life of PI was a series of profiles we published focusing on individuals.  It included a picture of one of our members alongside their story about living day to day life with PI. It was put together using a questionnaire covering some basic topics.  

We hoped that by putting a face and story out there it could help to engage our members and others who may be going through similar situations and be of some comfort to them while also bringing people together and encouraging them to become more involved with CIPO.  All these profiles can be found on our  Facebook page , on Instagram - @ciponational and on our   website .

If you think you would be interested in taking part then please feel free to contact us at and we can then send you all the details you will need to take part! 

Come and join our herd and help us tell your stories!


The CIPO National Board of Directors is currently accepting nominations. Current skills and areas of expertise the board is looking for:
  • Finance
  • Fundraising
  • Business
  • Legal
In addition, we are also looking for representatives from the prairies (Alberta, Manitoba, Saskatchewan).

If you, or someone you know, is interested in becoming part of the CIPO board, please email

CIPO is an equal opportunities environment, and we strongly believe in diversity and inclusion.
We need your help. 
As a volunteer-run organization, we are always looking for volunteers. If you are interested in volunteering with CIPO, please contact us at 
We need your support.
As a patient organization we work for you. We are a patient organization made of patients and family members. To continue making a difference in the care and treatment of PI in Canada, we rely on donations from people like you. Every dollar counts. 

We hope you have enjoyed this online version of our newsletter. We value your feedback, so please tell us your thoughts. Thank you for your generous support. Without it we could not continue to do the work that is so needed in the PI community. 


Whitney Goulstone
Executive Director, CIPO National

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