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.
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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
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 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/
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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 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
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 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
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
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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