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
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