Robert Pleticha
Online Patient Communities Manager, EURORDIS
Google+ https://plus.google.com/+RobertPleticha/
robert.pleticha@eurordis.org
Marta Campabadal
Online Patient Communities Coordinator, EURORDIS
marta.campabadal@eurordis.org
Email: webmaster@rareconnect.org
There is a mailing list: moderators@rareconnect.org for moderators to discuss situations
that arise and offer mutual support to each other. Any moderator can email a question
to the group. Occasionally, the team will also use this mailing list to send community
wide updates and other helpful hints about moderation and using social media effectively for rare diseases.
i am from greece. my 4 years old son has a rare deseasa called MASTOCYTOSIS. I would contact with other patiets or their families who are faced the same desease
Dear Fei,
Join the international online community for Mastocytosis patients.
https://www.rareconnect.org/en/community/mastocytosis-and-mast-cell-activation-disorders
The community is available in 5 languages and it’s modertated by patient representatives.
Once you join you can introduce yourself on the forum: https://www.rareconnect.org/en/community/mastocytosis-and-mast-cell-activation-disorders/forum
Only registered members wan see fully the members section. I’m sure you’ll find another patient from Greece on this community.
https://www.rareconnect.org/en/community/mastocytosis-and-mast-cell-activation-disorders/members
I’ve found a couple of websites I think will be useful for you:
http://www.mastocytosis.eu/countries/greece.php
http://ecnm.net/homepage/index.php/greece
You can email me at marta . campabadal @ eurordis . org for further questions.
Best,
Marta