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The SPIN Patient Engagement Advisory Team is comprised of people living with scleroderma who oversee the SPIN Patient Engagement Study. Team members are involved in the comparison of research dissemination tool effectiveness and in the evaluation to see if effectiveness depends on patient characteristics. They will also be involved in the tool selection, tool design, and dissemination of the study to ensure that it maximally addresses the needs of people with scleroderma.

Member

Maureen Sauvé was president of...

Maureen Sauvé

Patient Advocate

Vanessa completed her bachelor’...

Vanessa Cook

Research Assistant

Catherine immigrated from the Caribbe...

Catherine Fortuné

Patient Advocate

An educator, public speaker, and lobb...

Amy Gietzen

Patient Advocate

Geneviève Guillot was born in ...

Geneviève Guillot

Patient Advocate

Karen Gottesman is both a patient and...

Karen Gottesman

Patient Advocate

Amanda is the President of Scleroderm...

Amanda Lawrie-Jones

President of Scleroderma Australia and Scleroderma Victoria

John Michalski has been a scleroderma...

John Michalski

Scleroderma Caregiver & Advocate

Michelle worked as a Parks & Recr...

Michelle Richard

Patient Advocate

Ken was diagnosed with Systemic Diffu...

Ken Rozee

Patient Advocate

Catarina Leite (MSc) is a Health Psyc...

Catarina Leite

Psychologist

Tracy Mieszczak was diagnosed with sc...

Tracy Mieszczak

Patient Engagement Advisory Board