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.”

A Million Dreams Gala

May 31, 2019 in Minneapolis, Minnesota, USA

KrabbeConnect’s upcoming premier event, “A Million Dreams Gala,” to be held at Graduate Hotel in Minneapolis, Minnesota, will follow the 2019 Krabbe Translational Research Meeting on Friday, May 31st, 2019. The event space will be filled with pharmaceutical supporters of KrabbeConnect, rare disease organizations, academia, local businesses, and most importantly, families affected by Krabbe disease. Guests will be dazzled with an evening of mingling, fabulous entertainment, scrumptious food, and dynamic live and silent auction items – all to raise proceeds to support KrabbeConnect’s vision: a day in which each patient receives early diagnosis, state-of-the-art care, and lives a life free of disease.

Individual Tickets are available for $125, or purchase a couple’s ticket for $200. Tickets are available for purchase through Eventbrite. You can also support KrabbeConnect’s mission by becoming “A Million Dreams” sponsor. For more details, contact Stacy Pike-Langenfeld, co-founder of KrabbeConnect.

If you would like your event listed here, please send it to the web master.

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.