Dear Friends,
Before I could finish the letter I accidently send it.
Here is the rest of it.
Information may be made available in various ways, via telephone modem,
diskette, paper copy, or verbally.
By assembling, organizing and making available up-to-date information on PD,
PIBI will make a major contribution to improving patients' quality of life and
stimulating research into the cause and treatment of PD.
A FOUNDATION
PIBI is being established as an independent and non-profit making foundation.
It will be able to offer its seervices to all customers effectively free of
charge.
A smalll charge will be made in certain cases for direct costs such as postage.
The foundation is registered in the Netherlands as Parkinson Information Bank
International number 41187564 of the chamber of Commerce. The statutes of
the PIBI foundation are available from the head office (in Dutch). The
management
committtee is composed of the five members as follows : Dr. E. Brunt
(Neurologist),
mrs. B. Hennephof, mr. H. Reinsma, mr. C. Hill and mr C. Paap (the last 4
all patients).
INFORMATION
Information and data about PD and related issues is available from many sources
worldwide. Data gathering and validation is a major task requiring
substantial resources,
in terms of both manpower and communications.
When all available ddata is stored under one roof , one phone call or letter
to PIBI is
all that is required to request a search for information on any specified
topic. A PIBI
consultant will be available to discuss each customers requirements and, where
appropriate, to provide a short overview of the data package supplied.
If the requested data is not immediately available, PIBI will do their best
to trace the
required material via their extensive international network of contacts and
where possible
bring the material into the PIBI data bank.
EXCHANGE OF NEWS AND VIEWS
The bulletin board offers an important and beneficial opportunity for
patients who
would otherwise become isolated to maintain with other sufferers and the
outside
world in general.
TOPICS
- Medical : symptoms, diagnosis, drug treatment, drug trials, operations,
research
- Parkinson organisations : National, International and Young Onset Parkinson
- Complementary therapy : physiotherapy, homeopathy, speech therapy, Reiki, etc
- ADL : benefits, subsidies, health services, individual experiences,
holidays, exercise,
hobby's, sports, etc.
- Literature : medical books, conference proceedings, medical and welfare
publications,
poetry, medical magazines, society magazines
NEWSLETTER
3 to 4 times a year a newsletter will be edited. (Dutch and English). In
this newsletter
a list of new books, magazines, videos and articles will be printed as an
order list.
The items on the lists can be lent against postage costs.
Building PIBI is a hell of a job and costs a lot of time; time is running
out; we don't
have much time, so we must get it very well organized. That's what we are
doing now :
spending time so anyone can take over.
A plan of action will be ready within a few weeks. Then the plans are ready
and the
money from sponsors can be used for the real work : filling the Information
Bank with data.
INTERNATIONAL
PIBI will have offices in several countries. In Belgium PIBI is active and
within a few
months Denmark will follow.
A lot of work still has to be done and any help is wellcome.
SEND IN DATA
Any data available may be usefull, so send it by e-mail or by snail mail,
printed or on diskette to
PIBI
Oudedijk 56
3612 AC Tienhoven
The Netherlands
tel. +31 346 28 1021
data +31 346 28 1017
The ultimate objective is :" make Parkinsons a bad remembrance"
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Kees Paap Oudedijk 56
3612 AC Tienhoven The Netherlands
+31 346 281021 FAX + 31 346 281017
Age 45, 6 years PD
Collecting information
