Links

Ocular Melanoma (OM) is a rare disease. Today with technology the world is a very small place and there are many active groups/individuals in the most interesting of places engaged in the fight against OM. We will try a geographical model for this set of pages and see how we get on. 

IF YOU WOULD LIKE TO CONTRIBUTE TO THESE PAGES PLEASE DO. WE ARE GRATEFUL FOR ANY HELP GIVEN. 

We are collecting Information about international online advocacy and/or support groups for people with OM and/or metastatic OM, and those with OM experience (e.g.. family members). Most of these links so far are closed Facebook groups. Many groups have overlapping interests even when they have characterised themselves as informational or supportive- they can be both supportive and informational.

AFRICA

SOUTH AFRICA

South African Ocular Melanoma Group: https://www.facebook.com/groups/872334606182902/ 
Support group: 6 members
Administrator: Sam Buirski

AMERICA NORTH

U.S.

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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AMERICA SOUTH

ANTARTICA

ASIA

EUROPE

Pan-European Groups

Melanoma Patient Network Europe Ocular/Rare

https://www.facebook.com/groups/MPNEOcularRare/

Patient advocacy group has 279 members  Administrators: Dick Plomp, Gilliosa Spurrier, Bettina Rhyll, Iain Galloway

MPNE Ocular/Rare describes itself as a “sister site” of the Melanoma Patient Network Europe (MPNE). Both MPNE and MPNE Ocular/Rare are patient advocacy sites, but MPNE Ocular/Rare specifically caters to the needs and interests of OM patients. MPNE Ocular Rare seeks to launch a European-wide patient registry of OM patients and to work closely with the researchers involved in UM Cure 2020, a research project establishing European Centres of Excellence to develop new therapeutic approaches and share knowledge about OM and Metastatic OM. The interrelationship between MPNE, MPNE Ocular/Rare and UM Cure 2020 is explained in the UM Cure 2020 website. http://www.umcure2020.org/en/the-um-2020-project/who-we-are/

MPNE

Melanoma Patient Network Europe

https://www.facebook.com/groups/MelanomaPatientNetworkEU/

Patient Advocacy Group has 711 members

Administrators: Gilliosa Spurier, Bettina Rhyll, Kristin Bryon

Melanoma Patient Network Central and Eastern Europe,

https://www.facebook.com/groups/melanomaeasteuropean/

Patient Advocacy Group has 50 members, 0 posts in the last 30 days

Bettina Rhyll and Violetta Astratinei are administrators,

This is part of MPNE (Melanoma Patient Network) so it deals with all kinds of melanoma, including ocular melanoma- it does have a few posts on OM.

Ends

GERMANY

Aderhautmelanom - Treffpunkt für Betroffene und Angehörige von Betroffenen: https://www.facebook.com/groups/808518809184514
Support group for patients and family members with 135 members
Administrator: Kim Fuesch

Cancer Forum (Krebs Kompass): http://www.krebs-kompass.de/forumdisplay.php?f=70

IRELAND

Ocular Melanoma Ireland - OcuMel Irl

Is a new start up national organisation dedicated to helping people in Ireland with OM. Having said that its members take great pride in helping patients in other countries find their way to centres of exclellence for tratments. OM is not NOT the same as skin melanoma ergo the need for an independent body. Intesting fact - Ireland may have the highest incedence of OM in the world -j ust our luck ;-(

Website: http://ocumelirl.org/ 

Website has an open viewing poicy for FREE information

Facebook: https://www.facebook.com/groups/194087644399029

Patient and caregiver support group has 54 members.

Administrator: Siobhán Ní Fhionnagáin. To join this group, email the administrator a snapshot of your OM experience

Twitter: https://twitter.com/ocumel_irl

 

ITALY

Italy has a Facebook group for melanoma which has posts on OM.

Melanoma Italia: https://www.facebook.com/groups/1577349889192351/
Group for exchanging information and experiences has 405 members
Administrator: Roncada Enrico. It is linked to a support group with 451 members

Melanoma Parliamone Insieme (TERAPIA dell'ASCOLTO):  https://www.facebook.com/groups/759237457594005/

 

Ends

POLAND

Poland has an online newspaper (the Gazeta) containing a health forum dealing with all kinds of medical conditions. There is an extensive conversation thread on OM in the Gazeta, forum.

http://forum.gazeta.pl/forum/t,czerniak+oka.html

 

ROMANIA

Romania does not appear to have a dedicated forum or Facebook page for OM. However, it does have a Facebook page and website for Melanoma.

Melanom Romania: https://www.facebook.com/pg/melanomromania/about/?ref=page_internal

Melanom Romania is part of MPNE. The Facebook page is an open site with some info on OM. It also has a website. http://www.melanomromania.com.

 

Pacienti Melanom (Melanoma patients): https://www.facebook.com/groups/PacientiMelanom/?source_id=542126672589701
Support group has 395 members
Administrator: Violetta Astratinei
This is a private Facebook group administered by one of the MPNE administrators

 

SPAIN

Melanoma Ocular Habla Hispana: https://www.facebook.com/groups/2322667005213
Support group has 28 members, 0 posts in 30 days
Administrator: Agüero Patricia

Melanoma Ocular: https://www.facebook.com/groups/205782346278561/about/
Support group has 46 members, 0 posts in 30 days
Administrator: Miren Mentxakatorre

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SWEDEN

Sweden has a public advocacy-type group for people with all kinds of melanoma including OM.

Himlen är överskattad - kampen mot malignt melanom: https://www.facebook.com/groups/432479110096155/
Advocacy group has 2,786 members
Administrators: Kristina Meiton and Lena Baldinas

THE NETHERLANDS

Voor Oog Melanoom patiënten: https://www.facebook.com/groups/288190418239237
Support and Advocacy group with 94 members
Dick Plomp, Administrator

This group is part of Stichting Melanoom: https://www.facebook.com/StichtingMelanoom/
Group deals with all kinds of melanomas
Website: http://stichtingmelanoom.nl/mel/home

 

Morele steun voor oog melanoom patienten: https://www.facebook.com/groups/2062998790692932/
Support group with 16 members
Administrators: Dick Plomp and Michael Kuustra

For Dutch speakers in the Netherlands and Belgium

Oogmelanoom patiënten in Nederland en België: https://www.facebook.com/groups/1480143335559045
Support Group for Dutch speaking OM patients and their families with 37 members

 Affiliated with International League of Independent Ocular Melanoma Patient Associations: https://www.facebook.com/pg/iliompa/groups/?referrer=pages_groups_card_cta
Administrator: Peter Leeflang

 

U.K.

OcuMel UK

OcuMel UK is a registered charity run by eye cancer patients and family members.  They provide support for anyone affected by eye cancer.  They aim to give clear and accurate information to help you make the life choices that are right for you. Their friendly staff and volunteers understand how isolating it can be when you or your loved one are diagnosed with a rare cancer.  They are there for you wherever you are in your eye cancer journey. They raise awareness of eye cancer amongst the UK public and work with medical professionals to increase their knowledge.

Website: https://www.ocumeluk.org

To join any of the OcuMelUK groups below as a member, registration is required. Message the site and the Administrator will respond with either a Personal Message or a friend request. https://www.ocumeluk.org/get-involved/become-a-member/

Facebook page: https://www.facebook.com/OcuMelUK/

Twitter: https://twitter.com/ocumeluk?lang=en

 

OcuMel UK Facebook Groups

OcuMelUK Patient Support: https://www.facebook.com/groups/272872522878571/
Support Group has 251 members
YOU MUST BE AN OM PATIENT TO JOIN THIS GROUP
Administrator: Jo Gumbs

OcuMel UK Family Support: https://www.facebook.com/groups/625633620842311/
Support Group has 116 members
Administrators: Nicky McDowell, Jo Gumbs, Jo Dallas

OcuMelUK Stage IV Support: https://www.facebook.com/groups/714591725229726
Support Group has 56 members
Administrator: Jo Gumbs

OcuMelUK bereaved Support: https://www.facebook.com/groups/1422561251363811/
Support Group for those who have lost loved ones to OM. 31 members
Administrators: Jo Gumbs and Stacey Fun-Magnet

OcuMelUK welfare Support: https://www.facebook.com/groups/841998822502837/
68 members
Administrator: Jo Gumbs

OcuMelUK awareness and fundraising group: https://www.facebook.com/groups/1731614263762572/
Project group (fundraising) with 144 Members
Administrator: Jo Gumbs, Jenni Walker and Claire Marie, Sonya D’Amaro, Tracey Davies and Tamara Rimmer

OcuMel UK Knowledge and Strategy Group: https://www.facebook.com/groups/694469807312873/
Strategy group discusses issues of treatment and funding
150 members
Administrators: Jo Gumbs 

OcuMel UK website: https://www.ocumeluk.org/get-involved/become-a-member/

To join any of the OcuMelUK groups below as a member, registration is required. Message the site and the Administrator will respond with either a Personal Message or a friend request.

OcuMel UK Scottish Members: https://www.facebook.com/groups/1439285443050091/
Support group to improve treatments in Scotland has 27 members
Administrator: Jenni Walker

UK online fora/ OM

Cancer Chat: https://www.cancerresearchuk.org/about-cancer/cancer-chat/thread/ocular-melanoma-1

MacMillan Forum: https://community.macmillan.org.uk/cancer_types/eye-cancer/f/58/t/71582

OcuMel UK Scottish Members: https://www.facebook.com/groups/1439285443050091/
Support group to improve treatments in Scotland has 27 members
Administrator: Jenni Walker

 

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AUSTRALIA

Ocular Melanoma Australia and New Zealand support group: https://www.facebook.com/groups/OcularMelanomaAustralia/
Support Group: 46 members
Administrators: Ann Marie Weber and Susan Vine

Australia: Ocular Melanoma Forum: https://melanomapatients.org.au/ocular-melanoma-forum/