Read a message from our Chief Medical Officer on the precautions you can take during the COVID-19 crisis to help #FlattenTheCurve:

Skip to main content

The Canadian Association of PNH Patients (PNHCA) and Backpack Health Collaborate to Connect Patients with Resources, Research and Community

Backpack Health to expand resources for PNH patients with robust health data management platform

Dover, MA – February 5, 2019 – The Canadian Association of PNH Patients (PNHCA) 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.

Paroxysmal Nocturnal Hemoglobinuria (PNH) is a rare and debilitating disease of the bone marrow that affects the blood and major organs. PNH is not hereditary – it is an acquired illness that occurs when a patient’s oxygen-carrying red blood cells are destroyed by a protein called complement, an element of the body’s immune system. The destruction of the red blood cells by complement (also known as haemolysis) can lead to life-threatening blood clots, kidney disease, pulmonary hypertension and other catastrophic consequences. PNH can develop in men and women of all races, backgrounds and ages.

“Backpack Health’s platform allows us to provide the best support for our members, empowering them to track their own health data and connect to critical community resources,” said Barry Katsof, Founder and President of PNHCA. “Medical information made portable and shareable is key to helping patients manage their health. With health data consolidated on one centralized platform, we’ll be able to travel more confidently and easily share our health information with family, medical professionals and caregivers.”

Backpack Health also serves as a patient registry, offering patients the ability to participate in current research projects. With patient consent, Backpack Health de-identifies data to share with ongoing PNH research. This critical patient-reported data serves to support the development of the latest treatment options.

“Backpack Health provides rare disease patients and their caregivers with a health management tool that places the power with the patient,” said Jim Cavan, President and CEO of Backpack Health. “Our platform overcomes many of the challenges that rare disease patients tell us they face and has become a critical tool for patient communities. With Backpack Health, the Canadian PNH community can easily and securely track their health events multi-lingually and share it with those who care for them.”

About Backpack Health

Backpack Health, LLC builds secure, innovative information tools to help people manage their health journey – including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks. Learn more at

About Canadian Association of PNH Patients

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, 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. Learn more at