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.
Take the CIPO Patient Survey Now
CIPO is proud to present the 2015 PI Patient Survey. Now is your time to have a say in your treatment and your services. Please take a few moments to fill out this vital survey and make an impact in your health care. The results from this survey will help shape the future for PI care in Canada. As an added incentive, every survey will be entered into our prize draw. Let’s make a difference together!
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
World PI Week is Back!
Not only is April PI Awareness Month, but April 22-29 is World PI Awareness Week. This year, the focus is to raise awareness of PI. This year’s campaign: “TEST! DIAGNOSE! TREAT! – Turning hope into action” highlights the priorities of the PID community.
For those wanting to get involved, there are many ways as easy as signing a petition to holding your own event for the more ambitious. There are plenty of resources available at http://www.worldpiweek.org/get-involved. As for us here at CIPO, we will be holding a special Patient Education Day in Dartmouth, NS on April 23rd. #worldpiweek WPIW POSTER 2015
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
New Patient Education Events!
CIPO has announced it’s dates for 2016. Come out, learn more about PI and meet other patients and their families. These events are a great day out and not to be missed. Hurry and register early to save. Visit the events page now. Are we coming to your town? Come out take control of your PI.
It’s Flu Season!
Unfortunately, it’s that time of year again. Flu season is inevitable, but getting the flu isn’t. Protect yourself against the flu. CIPO has some helpful resources for you here.
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.