Patient & Family Meetings and Events

The listing of any event, or information about any event, or external web page(s) on the Lysosomal Disease Network web site does not imply or express any endorsement or guarantee of that event, that event information, or of any information on that external web page.

The National MPS Society’s
Annual Family Gathering 2017

The 2017 Annual Family Gathering of the National MPS Society, which convened during August 2017 in Minneapolis, Minnesota, is remembered in photos posted for your enjoyment!

‘Coffee for a Cure’ program

In September 2017 the Ara Parseghian Medical Research Fund and the University of Notre Dame College of Science launched the ‘Coffee for a Cure’ program with Mother Parkers brands of beverages and Tim Hortons. Mother Parkers has committed to donate five cents to rare disease research for every cup ($1.20/box of 24 cups) of Tim Hortons and three cents for every cup ($0.72/box of 24 cups) of all other Mother Parkers brands of coffee & tea purchased through L & S Personal Coffee (orders in Canada can use this LINK). (Additional Mother Parkers coffee brands include Marley Coffee, Brown Gold, Higgins & Burke, Wolfgang Puck, and Martinson.) A portion of the proceeds will go directly to the Ara Parseghian Medical Research Fund for its efforts to find a cure for Niemann-Pick disease type C. The instructions for how to make these special purchases, which involves the use of a promo code, are found on their site under the paragraph header “Purchasing Coffee for a Cure Single Cups.”

The Canadian Fabry Association presents
Patient Empowerment Ontario
Pilot-Project Workshop

November 12, 2017 from 9:00 a.m. – 3:30 p.m. (Time subject to change)
Location: Waterside Inn, 15 Stavebank Rd S., Mississauga, Ontario, Canada L5G 2T2
The guiding concept of this pilot-project workshop is that “patient empowerment is a process that helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.”
Workshop learning objectives include:
★ Participants will be able to comprehend what is meant by the term ‘lysosomal disease.’
★ Participants will leave with a strong understanding of Fabry disease fundamentals. This includes genetics, classic Fabry disease and variant Fabry disease, mutations, and other important medical concepts.
★ Participants will learn how to interpret their own labs and diagnostic tests.
★ Participants will explore looking at health holistically, as well as the practice of mindfulness along with the benefits it has, both short- and long-term.
The RSVP deadline was Sept. 20, 2017.
Accommodations will be covered for patients and their families if their commute to the Waterside Inn is more than 2 hours, or if they are flying-in for the Patient Empowerment Ontario Workshop. The Canadian Fabry Association will reimburse pre-approved mileage, bus fare, train, and parking for qualified participants. For patients and families requiring flights, the Canadian Fabry Association will arrange flights and will reimburse pre-approved transportation costs associated with getting to and from airports. Again, the contact deadline for this magnanimous offer was Sept. 20, 2017. Contact the Canadian Fabry Association with any subsequent questions that may arise.


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The listing of any event, or information about any event, or external web page(s) on the Lysosomal Disease Network web site does not imply or express any endorsement or guarantee of that event, that event information, or of any information on that external web page.