For the past four years, the CPPF has been participating in this charity event to raise awareness and critical funds to support our activities. This year we'd like to make it bigger and better than ever. To do this, we need your help!
If you are interested in helping us as our volunteer Program Coordinator or, if you are a group - our Program Coordination Team, please contact us at firstname.lastname@example.org You can be involved in all and any aspects of our event from planning, marketing, communications, social media, event coordination and evaluation and ultimately fundraising and education! It's a great way to contribute to an important cause and a great experience!
We encourage you to sign the Canadian Organization for Rare Disorders petition to the federal Minister of Health to approve the Orphan Drug Regulatory Framework. A regulatory framework can help in providing patients with access to treatments for rare diseases, as the framework facilitates coordination with drug manufacturers and other governing health entities. For more information, click here.
Canada will join other countries around the world on February 28, 2014 to celebrate International Rare Disease Day. For information on events in your community visit www.rarediseaseday.org.
The Canadian Organization for Rare Disorders also marks this occasion on March 3rd with its Rare Disease Day 2014 Conference and Dinner Gala. Individuals who are leaders and contributors to making Canada a better place for those living with rare diseases will be recognized. As well, the Canadian Strategy for Rare Diseases will be showcased. Visit our events page for more information.
It was a beautiful day for a run and walk on October 20th. Thanks to all those that participated and donated. The CPPF raised close to $12,000 for its projects this year! Check out the photos! If you are interested in joining us for this event as either a volunteer or participant - please contact us at email@example.com It's a great, energizing event for everyone!
Stay up to date on latest research, newly developed patient educational materials, upcoming events and other news from the only Canadian organization supporting Canadians with pemphigus and pemphigoid!
Only July 15, 2013, the CPPF's Board of Directors approved the CPPF's annual plan for 2013-14. In it you will find a list of our most recent accomplishments and the short and longer-term commitments. Projects are undertaken as resource become secured. If there is a project that you are particularly interested, please consider donating or volunteering your time. For more information, you can contact us firstname.lastname@example.org.
Once again, we are participating in the Scotiabank Waterfront Marathon, Half-Marathon, 5KM Run/Walk Charity Challenge to raise awareness and critical funds. 100% of the money raised will be donated to the Foundation and we will use these resources to continue to provide patient support and information to Canadians suffering from these conditions!
Join us the Pemphigus Pathfinders on the 5KM Walk on October 20th!
Great News for Ontario Patients!
In June 2013, the Government of Ontario’s Ministry of Health and Long-Term Care agreed to fund Rituxan (Rituximab) for the treatment of Pemphigus Vulgaris through the Ontario Public Drug Programs – Exceptional Access Program. Rituximab has improved the lives of many of patients with pemphigus. The CPPF is pleased to have been involved in a process that resulted in more patients with this challenging condition having access to Rituxan. We would also like to thank all those patients who provided letters of their experiences on Rituxan. If you are interested in working with us to help Canadians in other provinces/territories gain access, please contact us at email@example.com.
For more information on the Ontario Public Drug Program’s Exceptional Access Program’s reimbursement criteria visit http://www.health.gov.on.ca/en/pro/programs/drugs/eap_criteria.aspx.
On June 29th, 2013, Nabiha Ghaffur turned 21 years old and jumped out of a plane! She was brave, bold and generous! Thank you Nabiha! The donations will be put to excellent use as we continue to raise awareness and support patients across the country. For Nabiha's story and some amazing photos, check out the CPPF's Guardian Angels page.
The Board of Directors of the Foundation is pleased to welcome Daria Parsons to our team! Daria has over 25 years of health care experience in the not-for-profit sector as an Executive Director, a project manager, epidemiologist, researcher and writer. She will be working closely with us to ensure that all patient across Canada have the support and information they need, when they need it. Stay tuned for more information on our upcoming plans!
Thanks to the very special people who have been supporting and caring for Canadians living with pemphigus and pemphigoid including the members of the CPPF's Board of Directors (in this photo), our Medical Advisory Council, our donors (especially the many individual who have made financial contributions), and our affiliate partners - the International Pemphigus and Pemphigoid Foundation, the Canadian Skin Patient Alliance and the Canadian Organization for Rare Disorders. If you are nterested in help us help others, please do not hesitate to contact us at firstname.lastname@example.org
April 21-27 is National Volunteer Week! The CPPF would like to thank all its volunteers especially our Support Group Leaders across the country! Karen and Renay in Toronto, Maria in Montreal, Victoria in Ottawa, and Jeannie in Calgary. And of course a huge thank you goes to our dedicated Board of Directors who both guide and support the implementation of our programs and services.
In the fall of 2012 the CPPF responded to a call for Patient Evidence Submissions to the Ontario Public Drug Programs (OPDP) of the Ontario Ministry of Health and Long Term Care to assist in their review of the drug Rituximab for treatment of Pemphigus Vulgaris (PV). A number of patients contacted by the CPPF were able to summarize their experiences with Rituximab, which were then submitted. A positive review from the OPDP may allow this drug to be accessible to a greater number of PV patients, due to its high cost. A decision from the Ministry is anticipated in the spring of 2013.
The Canadian Pempihgus and Pemphigoid Foundation places a high value on our relationship with you, our donors. Without your support we would not be able to achieve our mission to improve the quality of life of Canadians suffering from pemphigus or pemphiogid. We thank you for your commitment to us. We believe that transparency and accountability are essential to our success. With this in mind, we have recently joined Imagine Canada’s Ethical Code Program. To learn more about this program, visit our "How Can I Help?" webpage.