3 thoughts on “Contact”

1. Pingback: 5 ways to build your rare disease community | RareConnect Support & Capacity Building
2. Dimitriadou Fei March 11, 2014 at 9:27 pm

   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

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   • Marta Campabadal March 12, 2014 at 9:00 am

     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

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