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Gaucher Disease Mentor Program

Helping Families and Individuals With Gaucher Disease

Gaucher Mentor Program Overview

The Gaucher Mentor Program provides people with Gaucher disease the opportunity to connect with others to share experiences, stories, and resources related to Gaucher disease. This program allows direct contact via phone or email with individuals who have experienced and problem-solved many of the questions or concerns that families and individuals with Gaucher may have.

Patient advocates and patient mentors can support and be a positive impact on other people with Gaucher disease. Sharing their experiences can be empowering to others, and can provide positive reinforcement as the new diagnosis of the genetic condition often raises many questions and concerns.

On this page, you will find a list of our mentors and their email addresses so that you can write to them directly and privately.

To learn more about the Gaucher Mentor Program, or if you are interested in consideration to become a mentor, please click below under “Other Links”. If you have been the recipient of assistance from our Mentors, we encourage you to fill out our online evaluation form to give us feedback about the Gaucher Mentor Program. This information will be private and will go only to the National Gaucher Foundation (NGF) to help them better serve you.

It is important to realize that the information that appears on this Website is not meant as replacement for proper care from a doctor, therapists, nutritionist, support group, or other medical professional. Always seek the advice of a medical professional, with any questions you may have regarding your health.

Mentor List

Name Email
Carol Fink
Photo & Bio
California
Adult with Gaucher
skyemum@comcast.net
Cyndi Frank
Photo & Bio
California
Adult with Gaucher/ advocate/ speaker/ works for NGF
cyndi@gaucherdisease.org
Shelley Viviani
Photo & Bio
California
Adult with Gaucher
shelviv@gmail.com
Robert Pavel
Photo & Bio
California
Adult with Gaucher
rpavel@sbcglobal.net
Linda Rubenstein
Photo & Bio
Massachusetts
Adult with Gaucher/ advocate/speaker
rubensteinlinda@comcast.net
Louise Glickman
Photo & Bio
North Carolina
Parent of adult with Gaucher
lsglickman@gmail.com
Elaine Weiss
Photo & Bio
Ohio
Adult with Gaucher
elainehweiss@peoplepc.com
Kevin R. Kline
Photo & Bio
New Jersey
Adult with Gaucher /Pioneer Program
kevinrkline@yahoo.com
Chris Stanton
Photo & Bio
Georgia
Adult with Gaucher
chris_stanton@comcast.net
Betsy Simon
Photo & Bio
Ohio
Adult with Gaucher advocate/speaker
betsy@familysimon.net
Rosalie Borovetz
Photo & Bio
Pennsylvania
Parent of adult with Gaucher
rosieb50@aol.com
Jeffrey Cohen
Photo & Bio
New York
Adult with Gaucher
jeffmcohen@gmail.com

Other Links