Advocacy & Support
Across Canada, PNH community members joined together to raise public and government awareness of PNH, and of the issues facing patients. The Canadian Association of PNH Patients fought passionately for access to eculizumab, and moved governments to provide this life-saving treatment through a pan-Canadian agreement in July 2011.
However, there are still Canadians living with PNH who find themselves without access to PNH medications.
If you or someone you know is still without access to eculizumab or other approved medications through public or private coverage, or if you are having difficulty finding a PNH specialist, contact the Canadian Association of PNH patients at firstname.lastname@example.org for support.
To view our advocacy videos from the eculizumab campaign, see below:
Be a Mentor, Request a Mentor
Learning that you have a rare and unfamiliar condition can be stressful, confusing and frightening. The Canadian Association of PNH Patients can help connect Canadians recently diagnosed with PNH with peers also living with the condition. Mentors can support new members of the PNH community with practical information and advice for not only coping with a rare disease, but thriving.
The Canadian Association of PNH Patients mentors:
- are Canadian PNH patients
- have been living with PNH for over two years
- are living well with the condition
The Association will make every effort to ensure that mentors are assigned to newly-diagnosed individuals based on demographic and geographic proximity.
THE SUPPORT OF A MENTOR IS NOT INTENDED TO REPLACE THE ADVICE OF YOUR PHYSICIAN. PLEASE SPEAK WITH YOUR DOCTOR IF YOU HAVE ANY QUESTIONS OR CONCERNS ABOUT YOUR HEALTH.