The PKD Foundation of Canada chapters and the volunteers who lead them are the backbone of the polycystic kidney disease (PKD) community, driving vital programs around the world. They are made up of groups of volunteers – PKD patients, family members and friends just like you!
Click on our interactive map below to find a chapter near you and discover more ways to get involved! Don’t see a chapter near you? Email us at firstname.lastname@example.org to learn about starting a chapter in your local community. There are also many other ways you can participate by helping to Spread the Word.
Stay up to Date
There are many ways to get involved with the PKD Foundation of Canada. We are driven by committed volunteers – just like you – who coordinate programs and engage their communities to take action. From advocating for patients to helping raise funds for vital research, there are many ways you can get involved.
Three ways to get started:
- Through activities like educational seminars and trivia nights, you can help your local chapter raise money for research and support for those affected by polycystic kidney disease (PKD).
- Connected in the community? You can help raise awareness for PKD by reaching out to neighbours, colleagues and friends to help educate and empower. You can also contact lawmakers and local officials to increase government support for PKD research.
- Support the Walk to END PKD campaign, our national fundraising event. Learn more about the Walk to END PKD, and how simple it is to contribute!
If you’re interested in joining or supporting an existing chapter, use our interactive map to find out more, or contact us at email@example.com.
Why now and why in Quebec?
The PKD Foundation of Canada is the only national organization solely dedicated to fighting polycystic kidney disease through research, education, advocacy support and awareness. It is essential that the Foundation, supported by all the members of the PKD community in Canada, offers its support to Quebec. In the coming weeks, Quebec will review the only treatment available for PKD for formulary coverage.
In February 2018, the treatment (tolvaptan or JINARC) will be submitted to Institut national d’excellence en santé et services sociaux (INESSS), the provincial entity responsible for the evaluation of medical treatments, for inclusion on the List of Medications of the Régie de l’assurance maladie du Québec (RAMQ).
In this regard, the Foundation is trying to mobilize the PKD community in Quebec to help educate decision-makers to the impact of PKD and the need for this treatment. There are several ways to get involved: Complete a short survey, share your story and become an ambassador. YOUR CONTRIBUTION IS CRITICAL!
The main objective of this campaign is to make the decision-makers more aware of your reality, as well as the challenges of this disease.
For more information on this unique treatment option, visit the learn section.
To present the daily lives of people living with PKD and to make their voices heard by decision-makers, who will decide on public access and reimbursement for the only treatment available for PKD, the PKD Foundation of Canada invites you to answer a short survey which is available online. The results of this survey, completed in confidentiality, will be submitted to INESSS, the provincial entity responsible for the evaluation of medical treatments, for inclusion on the List of Medications of the Régie de l’assurance maladie du Québec (RAMQ).
The survey will be available until February 19, 2018.
The goal of this survey is to make decision-makers aware of what having access to this treatment option would mean to PKD patients, with the objective of helping them manage their disease and avoid other therapeutic alternatives.
Completion of the survey should take you 10 minutes or less.
Voices of PKD is a collection of stories, testimonies and photos that tell the story of PKD through the eyes of the PKD community, and help decision-makers better understanding life with PKD.
You can help give your voice to a widely unknown disease by sharing your story through the link below. Your experiences can paint a powerful picture of what it’s like to live with PKD and help others to know they are not alone.
To help government decision-makers understand your reality, as well as the challenges associated with PKD, you can participate in the advocacy campaign in a very concrete way. You can help end PKD by talking to the media or your local Member of the National Assembly (MNA).
This tactic consists of sharing your story with the local media to raise awareness of PKD in your community to help reach decision-makers. The media represents an excellent way to help us raise awareness of PKD.
Meetings with your local Member of National Assembly (MNA)
It is also possible to contact your MNA to share your experience with PKD and raise awareness of this disease.
If you are interested in being part of the media relations campaign or meeting your local provincial elected official, you can start by sharing your story in the Voices of PKD section and a representative of the PKD Foundation of Canada will communicate with you to discuss next steps.
We look forward to your support in the fight against PKD!
We are in between events, but please continue to check back! You can see our full event schedule for the Foundation here. If you’re looking for local resources, reach out to your chapter coordinator or contact us at firstname.lastname@example.org.
Chapters are the driving force behind local and national initiatives for the PKD Foundation of Canada.