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Myasthenia Gravis Europe Mailing List
in English language
1. Aims
2. Registration and cancellation
3. Activity
4. Useful Links
5. Help!
Aims
To help each other: patients or ex patients of Myasthenia Gravis.
The purpose of mailing list is to help among patients, relatives of patients or ex patients of the Myasthenia Gravis, mainly by encouraging the illness fighting and the exchange of information abaut his own experiences and his own research.
Non profit
Myasthenia Gravis Europe Mailing List is constituted by volunteers which offers you free and without purpose of profit, the necessary resources for the activities of mailing list. The principal resource is the time devoted by the members to read the messages of the others, to furnish them his own comfort and his own aid. Every member is formally undertaken not to use for profit the information gotten with the help of mailing list.
Parity among the members
All the members of mailing list are equal and they have the same rights and the same mutual missions.
To Fight the Myasthenia Gravis
Promoting the improvement, the knowledge and facilitating the use of resources, structures and all the already available means.
Seeking and promoting new of its.
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Registration and cancellation:
Requirements and formality of registration:
Whoever can require to enroll to "Myasthenia Gravis Europe Mailing List", by specifying his names and addresses and the purpose of Your demand, Your state relatively to the Myasthenia Gravis (Patient, patient's relative, ex patient, translator, researcher, physician, paramedical or other),
He has to declare to respect and has to accept formally the finalities and the rules of mailing list. The candidate has to send the request to the delegate, currently: which will propose it to all members, if there will be no objections within few days, the same delegate will communicate the registration to the new member and to the others.
Formality for the cancellation:
In any moment every member can simply cancel him requiring it to the list. Even if not mandatory, the motivation is appreciated.
The outgoing member leaves however mailing list, free to continue to utilize, for his own institutional purposes, all the information furnished during its period of registration. Every member can be canceled if the majority of 2/3 of the other members requires it.
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Activity of the mailing list:
Actual
Mailing list: In February 2001 some members are granted for freely exchanging E-mail message. Every member knows E-mail address of all other members, so that he can write them privately. One of the members holds the affiliate list updated, it also, automatically and without censorships, relaunch to all members the messages directed to the list. Periodically care to compile the collection of the last messages and transmits to the members that want it.
Upcoming
Basic information on Myasthenia Gravis:
General characteristics. Symptoms and prognosis. Diagnosis. Therapies. Medical centers. Medicines. How to fight the Myasthenia Gravis. Others to be defined
Particular information on the myasthenia gravis:
Thymus and thymectomy
Others to be defined
Members' data base with information every member retains to want to furnish
Data base of the messages
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List of the preferred links:
Useful Web links
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How to help us
By participating in mailing list. Comments, suggestions and helps to improve and to develop our activities are well desired.
It is appreciated every contribution that helps to improve the communication among the members, also of various languages, and the increase of Myasthenia Gravis Europe Mailing List.
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Date of the last revision: 11.07.2002. Thanks to Sebastiano Muni and to Roberta for the aid to the translation in English language