National Gaucher Foundation

Gaucher Patient Mentor Program Information

The Gaucher Patient 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 Gaucher patients 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.

It is important to realize that the information that appears on this Website and in the forum 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.

Purpose:

The National Gaucher Foundation (NGF) offers a wide-range of resources for the benefit of the Gaucher community. This Patient MentorProgram will complement the many resources offered by the NGF to support the needs of the patient community.

Objectives:

• To ensure that newly diagnosed patients have access to other patients with the goal of having their questions answered by people who have already dealt with the issues of coping with the diagnosis.
  
  
• To provide Gaucher patients with answers to their questions through other patients (mentors).

• Ensure that newly diagnosed patients have access to other patients with the goal of having their questions answered by people who have already dealt with the issues of coping with the diagnosis.
• Provide resources to individuals with Gaucher Disease
• Be a Mentor in this program for a period of 1 year.
• Be available for training based on a schedule mutually agreed upon by mentor trainee and Gaucher Mentor
• Have Gaucher Disease, or child/children with Gaucher disease, or both.
• Currently be on treatment(s) or have a family member on treatment
• Be involved or have been involved with testing and evaluations relative to Gaucher Disease.
• Attend patient meetings.
• Be willing to call and email mentored individuals on a regular basis to keep up with their progress and needs, and to inform them of new developments and resources for their family.
• Have no preconceived ideas about the age, gender or ethnicity of the individual or family to be mentored.
• Have no problem with public speaking.
• Have no agenda of their own and agree help individuals and their families, especially those new to the process of evaluation, treatment, insurance, etc.
• Sign a non-disclosure clause that prohibits providing information to anyone other than another Gaucher Mentor, about the individual or family they are mentoring, except with the express consent of that individual or family.
• Advise individual who they are mentoring that other mentors may will have access to their information.
• Agree to encourage others to mentor and to help those who interested in becoming mentors make that goal a reality.
• Be able to physically and mentally execute the duties of a Mentor as described above.
• Agree to talk about the Gaucher Mentor Program and hand out literature at Patient meetings, conferences or seminars.
• Agree to utilize the Gaucher Mentor Program and Forum on the NGF website at www.gaucherdisease.org.
• Encourage individuals with Gaucher Disease to allow information about themselves to be published in the Gaucher Registry for the benefit of others, as well as a method of statistical data-gathering.
• Agree to have name, email and phone number published in "Meet the Mentor" materials such as Mentor Resource Guide, NGF website, NGF newsletter and mailings to treatment centers and others with Gaucher Disease and possibly the genetic disease list serve.
• Allow Genzyme Treatment Support and Gaucher Treatment Centers to have a Mentor list which includes Mentors' name, phone number, email address and city and state of residence. This will be a valuable resource to GTS and the Treatment Centers who are daily on the front lines with individuals with Gaucher Disease.
• Agree to be evaluated by individuals who have utilized the Gaucher Mentor Program.
• Agree to a six-month trial period from the start of the program which is June 1, 2008. If after 6 months, the NGF has evaluation information indicating that the Mentor has not lived up to the criterion and expectations of the Gaucher Mentor Program, that Mentor may be dismissed.