The Canadian Association of PNH Patients is a not-for-profit Canadian organization formed in 2009. The mission of the organization is to connect Canadians affected by Paroxysmal Nocturnal Haemoglobinuria and advocate for the best possible care for patients and ensure they are equipped with the most current tools and information to help them live well with the condition. The organization also provides support to caregivers, and works to increase awareness and understanding of PNH.
Paroxysmal Nocturnal Haemoglobinuria (PNH) is a very rare and debilitating disease of the bone marrow that affects the blood and major organs. It is a chronic, life-threatening illness and can have devastating effects upon a patient physically, mentally and emotionally. This website represents a growing community of patients, caregivers and members of the medical community who wish to support and improve the quality of life of those with PNH.
FREE APP! Manage your PNH journey from anywhere in the world with Backpack Health.The Canadian Association of PNH Patients has partnered with Backpack Health, LLC to provide a free, secure health data management platform to help individuals, families and caregivers in the PNH community manage their medical information and gain better access to patient-specific resources. The Backpack Health platform will also serve as the first patient-led disease registry in PNH anywhere in the world contributing to important research advances. Learn more about the Anytime Access to PNH Health group today!
Patients who are part of the OneSource program and rely on public transit can now take a reimbursed ridesharing/taxi service to and from the infusion clinic where they receive their Soliris (eculizumab) treatments.
Alexion Canada (the manufacturer of Soliris) hopes this service will help alleviate any concerns patients may have regarding taking public transit when travelling to and from infusion clinics during this unprecedented time.
Details about this program:
The OneSource program is now offering travel assistance should a patient indicate that they regularly take public transit to and from their infusion clinic appointments.
Patients will choose and book their own car service to and from their appointments.
Alexion recommends using Uber, Talixo or Lyft as these companies have implemented strict policies around car cleaning in light of COVID-19.
Lyft (Only available to residents in ON and BC)
How to use this service: https://help.lyft.com/hc/en-ca/articles/115013079988-How-to-request-a-ride
How to use this service: https://www.uber.com/ca/en/ride/how-it-works/
How to use the service: https://talixo.com/how-it-works/
After the infusion appointment, the patient must submit their receipts to the program via email and OneSource will process reimbursement accordingly.
Patients can send their receipts to: email@example.com
If you have any questions about this new offering, contact your OneSource nurse case manager for further details.
Read stories from patients within the Canadian PNH community.