Live Your Best Life

Join us July 21-23, 2017

Founded in 1984, The Canadian Society for Mucopolysaccharide and Related Diseases Inc. (The Canadian MPS Society) is committed to providing support to individuals and families affected with Mucopolysaccharide (MPS) and related diseases. Our bi-annual conferences give families affected by MPS & related diseases an opportunity to learn about new research, treatment and care, and to share information and experiences with other affected families and individuals. Because MPS diseases are very rare, our conferences often represent the only opportunities families have to meet others whose family members share the same disease. The rarity of MPS diseases also means that published literature is hard to come by, making in-person communication vital.

Conference Objectives:

The Society’s 2017 National Family Conference will provide an exceptional opportunity for researchers and clinicians to translate knowledge to affected families and key stakeholders. The conference will also offer a dynamic child/youth program to ensure that the affected children and their siblings in attendance have a chance to learn from each other as well.

Basic aspects of the 2017 National Family Conference:

It is expected that the conference will be attended by 100 affected individuals and family members from across Canada, 10 medical professionals, 50 affected children/siblings, and 20 volunteers. The conference will take place over 3 days: the first day of the conference will consist of afternoon registration and an evening welcome reception, the 2nd day will consist of knowledge translation sessions and syndrome breakout sessions, and the 3rd day will consist of a half day of knowledge translation sessions. A child/youth program for affected children and their siblings will take place concurrent to the conference sessions.

Plenary/Knowledge Translation Sessions:

These sessions represent lectures directed to parents of affected individuals and adults affected with MPS or a related disease. Topics will include key advances in disease pathophysiology, management and treatment best practices, current and upcoming research and clinical trials, educational and financial issues, and psycho-social issues such as dealing with grief and loss, adolescence, transition to adulthood, and independent living. There will also be opportunities for affected individuals to present their perspectives.

Syndrome Breakout sessions:

These sessions give affected individuals and parents of affected individuals an opportunity to meet in an informal setting and share information and experiences.

Child/Youth Program:

The children affected by MPS and related diseases are our inspiration and we want them to leave the conference with new friendships and memories to last their lifetimes. We will provide an entertaining program for them and their siblings in a safe environment concurrent to the Knowledge Translation Sessions.

Information Dissemination:

Information from the conference will be published in up-coming issues of our quarterly newsletter. Presentations will be posted on our website (www.mpssociety.ca), pending approval from speakers.. We plan to film interviews with doctors and other medical professionals in attendance, as well as with families representing various types of MPS.

Outcomes/Conclusion:

We expect that parents, affected adult delegates, and professional delegates will leave the Canadian MPS Society’s 2017 National Family Conference with a broader understanding of MPS diseases and the particular issues important to them, and that Society members who are not able attend will benefit from the materials disseminated after the event. We hope that delegates will leave with a feeling of connectedness to others who are facing similar challenges and a sense of hope for the future, and that the children in attendance will leave the conference with new friendships and an understanding that there are other children in Canada who are dealing with similar circumstances, whether as another affected child or a sibling. Undoubtedly new collaborative possibilities will emerge between the Society and the various stakeholders in attendance, and we welcome the chance to work together toward a brighter future for those Canadians affected with and by MPS and related diseases. We strive to provide our members with a weekend filled with education and inspiration and to provide resources to affected individuals through the desemmination of conference infomation and presentations. Please do not hesitate to contact us should you require any additional information.

With sincere thanks,

Kim Angel
Executive Director Canadian MPS Society