The Canadian Association of PNH Patients held a meeting in Toronto for patients and caregivers this past April, including a full agenda of informative sessions and workshops.
Please click the links below to download the presentations delivered.
– Intro and Updates – An introduction led by Barry Katsof to the Canadian Association of PNH Patients, including an update on its accomplishments and resources offered.
– PNH – A User’s Guide – A clinical presentation on PNH, its tests and treatment, and Q&A led by Dr. Richard Wells, medical advisor to the Canadian Association of PNH Patients, and hematologist at Sunnybrook Health Sciences Centre.
– Telling Our Stories – What We Achieved Together – A review of the accomplishments of the Canadian PNH community with regards to rare disease drug funding in Canada, and the important role the patient voice played in these developments.
– Advocacy – Why It Still Matters – A discussion led by Ryan Clarke of Advocacy Solutions on how to develop an effective advocacy plan, key messages, and the role of patients and the Association in advocacy.
Thank you to all who attended and shared this event with us, and special thanks to those who volunteered their time to help make this event a success.
Please stay in touch with the Canadian Association of PNH Patients to hear more about future events! Email us at contact@pnhca.org or submit your email through our homepage to receive the latest news and updates from our group.