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2023 Canadian MPS Society's National Family Conference
The CanMPS National Family Conference brings together MPS affected individuals, families, healthcare specialists and industry partners.
When and where
Date and time
Fri, Jul 21, 2023 4:00 PM - Sun, Jul 23, 2023 1:30 PM MDT
Location
Delta Hotels by Marriott Calgary Downtown 209 4 Avenue Southeast Calgary, AB T2G 0C6 Canada
Refund Policy
About this event
- 1 day 21 hours
- Mobile eTicket
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 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 music-themed child and youth program for affected children and their siblings will take place concurrent to the conference sessions with an outing to Studio Bell, the National Centre for Music.
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 Plenary/Knowledge Translation and Syndrome Breakout Sessions.
The Rare Star Awards Gala will be held on the evening of Saturday, July 22, in conjunction with our annual conference. Join us in celebrating the courage, resilience, and strength of these extraordinary families and honouring the amazing achievements of our Rare Stars that help MPS families live their lives to the fullest.
More details can be found at: www.mpssociety.ca/2023-nfc/
Tags
About the organizer
Support for Families. Research for a Cure.
Mucopolysaccharidoses (MPS) and mucolipidosis (ML) are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes. The missing or insufficient enzyme prevents cells from recycling waste, resulting in the storage of materials in cells throughout the body. As the disease progresses, there is widespread damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system, leading to a shortened lifespan.
When families learn that their child has been diagnosed with MPS or a related lysosomal starage disease, that may potentially take their child’s life, it places on them a heavy emotional, physical and financial burden that few can relate to or understand.
The Canadian MPS Society helps ease the burden by directing families to important sources of information, research and medical help, and by connecting them with other families experiencing similar situations to expand their network of support. We also provide financial support to families through our Family Assistance Program—to date, we have funded over $100,000 in grants to offset the many costs incurred with a diagnosis. We try to help families to focus on their children and their families and make sure they know that they are not alone in their journey.
Our programs and services include:
- Educational Resources– Available in both english and french
- Financial Assistance Program– Providing financial support to help families manage costs associated with care and treatments of MPS and related diseases
- Advocacy – Supporting families with accessing appropriate care and treatment, connecting to other members for mutual support, and during times of loss and bereavement
- National Conference – Our biennial national conference brings together the MPS community to learn about advances in care and treatment while developing life-long friendships
- The e-Connection – Our monthly digital newsletter is a current source of news from Canada’s MPS community, including stories from our members and partners, research and treatment updates, and information about upcoming events.
The Canadian MPS Society exists to support all those affected by MPS – individuals, caregivers, families, friends, support workers, and health care providers.
Our staff are available by calling our toll-free number: 1-800-667-1846 or by email: info@mpssociety.ca