CIPO is the only patient organization in Canada representing people living with primary immune deficient diseases and their families. CIPO is dedicated to improving the quality of life of those affected by primary immune deficient diseases through support, advocacy and educational services.
Become a part of the CIPO Community now (there is no cost to join) and you will enjoy all the benefits of membership:
- Quarterly email newsletters delivered to your inbox
- Attend educational events at no cost
- Join a local support group
- Publications and resources on Primary Immunodeficiency
- Stay up-to-date on the latest in the PI community
- Connect with other patients, family members and caregivers
- Have your questions answered, in a safe, confidential environment.
International Burden of Disease Survey – Take Part Now! – Deadline Extended
Canada has been chosen as one of eight countries to take part in an International Burden of Disease Study in Primary Immunodeficiency. This is an extradordinary opportunity for us to have evidence to how PI impacts patients in Canada and globally. We are looking for 50 English and 50 French patients to take part before October 30th. Participation includes a completely confidential online questionnaire. For complete details and to register, please email email@example.com
Updated Zika Statement
CIPO has updated its position on Zika in alignment with IPOPI (the International Patient Organization for Primary Immunodeficiency) in light of the latest guidance issued by the US Food and Drug Administration (USFDA) requiring universal testing of all donated whole blood and blood products. Please read IPOPI’s full statement here: ipopi-position-statement-zika-virus_final
CIPO Mourns Passing of Founding Member
It was a sad day when news came that founding member and friend of CIPO, Mike Whelan had died, May 25 in Cranbrook with his family. Mike was a strong advocate for those living with Primary Immunodeficiency, like himself, and he spearheaded the BC Chapter and spent many hours reaching out to patients individually. He was on the front lines on the organization until last year, when his health made him take a step back. We are forever grateful to have had Mike and his leadership with us at CIPO for 18 years. He was loved and he will be missed. Another former president, Libby Tough, memorializes Mike in our latest newsletter.
Spring Newsletter Out Now
Read Libby Tough’s memorial to Mike Whelan, news around the country and more Spring.
Maritimes Adds SCID to Newborn Screening
Nova Scotia, PEI and New Brunswick are the latest provinces to add screening for Severe Combined Immunodeficiency (SCID) to the Newborn Screening list. The Maritimes is only the second jurisdiction in Canada to expand its Newborn Screening program to include SCID, Ontario was the first in 2013. Read more http://www.cbc.ca/1.3501512
Special Statement on Zika Virus
You may have seen on the news that there have been several outbreaks of Zika virus in various countries (higher occurrences in Latin American countries). While the virus generally manifests itself in a mild form, it can have severe effects in pregnant women and unborn babies. As the Zika virus is an enveloped virus it should however be of no concern regarding the viral safety of plasma products. Currently there is no specific treatment or vaccine Zika virus, prevention for PID patients as for anyone else is very important. IPOPI would recommend PID patients to avoid whenever possible travelling to Zika virus endemic areas. When travelling or living in endemic areas cannot be avoided please consult with your doctor for personalised recommendations about prevention and protection. For a full statement from the International PI Patient Organization: IPOPI Position Statement Zika virus_Final
More Events Announced!
CIPO is happy to announce more Patient Education Events for 2016, so even if you missed out the first time, you might have another chance. 2016 has already taken us to Halifax and Toronto. Coming up: Burnaby, Peterborough and Winnipeg!
CSL Launches Updates to Hizentra App
A Push training video is now available of the Hizentra app. It is a great video for patients to learn or refresh their skills on how to administer push Hizentra. The app can be accessed and downloaded from a landing page. You will only be prompted to download the French version if your phone is set to French, otherwise your default download will be the English one. The app also contains helpful information, tools and resources for the patient, which can be accessed at all times. The app can be downloaded here.
Australian SCID patient gets new immune system
Check out this amazing story about Kini Tawalo, a boy from the Northern Territories born with Hunter’s Syndrome and needing the important bone marrow transplant. With no match to be found, doctors did some incredible work to save him read about it here: http://www.smh.com.au/technology/sci-tech/sydney-doctors-pioneer-procedure-that-gives-baby-boy-new-immune-system-20150228-13e1qb.html
Patient Notification System
Register either online or by phone for this confidential free service, which notifies the patient (or other registrants, e.g. caregiver) directly of any voluntary or mandated withdrawals or recalls of plasma protein therapies.
You can be notified by phone, email or fax. Visit www.patientnotificationsystem.org or call 1-888-UPDATE-U (873-2838) to register.
At CIPO, we are a volunteer-run non profit organization. We rely on sponsorship and donations to supply the valuable services that so many people depend upon. Please consider making a financial gift today and helping us continue to better serve the primary immune community. Thank you for your continued support.
We would like to thank the IDF, the Jeffrey Modell Foundation, ESID and IPOPI for allowing us to use/link to their websites in order for our patients to research their immune disorders. We appreciate all the hard work and dedication that has gone into their websites and publications and are grateful to be granted permission to use them.