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OCUMEL ListServ

This ListServ group provides information and support for people with OM. The ListServ messages are sent through private email and available only to people on the mailing list. Archived emails can be obtained more easily than old Facebook posts. This ListServ tends to be U.S. centred, although not everyone on it is based in the U.S. The ListServe was created in 2001 to exchange information or support via e-mail. http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=ocu-mel&A=1

Websites

Melanoma Research Foundation 1411 K Street, NW Suite 800, Washington, DC  20005, T 202-347-9675 C 202-579-3450, F 202-347-9678
Lauren Johnston, MSW Program Officer, Rare Melanoma Subtypes
Email: ljohnston@melanoma.org
Website: www.melanoma.org

Facebook Groups

Ocular Melanoma Support: https://www.facebook.com/groups/219970988124534/
Support Group has 1,059 members
Administrator: Elizabeth Olmstead McBride

Ocular Melanoma Support Group: https://www.facebook.com/groups/378543315676625/
Support Group has 66 members
Administrator: Anne Trigg

Ocular Melanoma Friends and Family: https://www.facebook.com/groups/omffriends/
Support Group with 1,546 members
Administrators: Miriam Counts, Ocular Melanoma and Grant Allen

Ocular Melanoma & Eye Cancer Patients Forum • The Eye Cancer Foundation: https://www.facebook.com/groups/ECNPatients/
Support Group with 1,407 members
Administrator: Anne-Marie Montijo

Ocular Melanoma Support for Spouses, Caregivers and Significant Others: https://www.facebook.com/groups/636119123093560/
Support Group with 256 Members
Administrators: Rebecca Lynn, Rob Spiers and Michele Metts

Metastatic Ocular Melanoma: https://www.facebook.com/groups/388067454681743/
Information and Support group with 744 members
To join, submit a request via Facebook AND send an e-mail to metastaticocularmelanoma@gmail.com with a statement on why you want to join.
Administrators: Ocular Melanoma, Ted R. Popp and Michael London

Ocular Melanoma Mets group https://www.facebook.com/groups/OcularMelanomaMets/?fref=gs&dti=1115047875186317&hc_location=group
Support Group has 270 members
Administrators: Jerry Cunningham and Suzanne Lescure.
This group is for those with metastatic ocular melanoma. All members must have metastatic disease and be referred by someone who can vouch for their identity and that they do have ocular melanoma metastases.

Ocular Melanoma Widows/Widowers: https://www.facebook.com/groups/1709472895988735/
Request membership and email the administrator to confirm. Robspi98@gmail.com
Support group has 29 members
Administrators: Rob Spiers and Kimberly Patton Borgeson

A Cure In Sight Team For Ocular Melanoma: https://www.facebook.com/groups/466300496753149/

 

The Eye Cancer Network - ECF Doctors Forum: https://www.facebook.com/groups/ECNDOCTORS/
Doctors’ group: 147 members
Administrators: Helen Demaras and Paul Finger

Groups in various States and sections of the U.S.

 

Texas Ocular Melanoma Group

Ocular Melanoma Rocky Mountain Region and 4-Corners Group

Mid-Atlantic Ocular Melanoma Group

California and the Western U.S. Ocular Melanoma Group

Ocular Melanoma Support Group of Michigan

Eyes on Minnesota Ocular Melanoma Group

Ocular Melanoma Patients of Texas

Savannah area Ocular Melanoma tracking Group

Florida Cure Ocular Melanoma

Houston Area Ocular Melanoma

 

Forum for OM for U.S. users

Smart Patients: https://www.smartpatients.com/forums/ocular-melanoma
Fundraising Group has 200 members
Administrators: Melody Burchett King and Megan Bekkedahl

Ends