Edna at the Palace! - Unique - The Rare Chromosome Disorder ...

who to contact
To make life easier for you we have
listed below the person best to
contact for our different services.
If we are not at our desks when you
call, please leave a message and we
will get back to you as soon as
possible.
You should contact BEVERLY if:
■ You haven’t yet received your initial letter from
Beverly or Satnam with information about your
child’s rare chromosome disorder and links to
other families (please allow up to 28 days from
first contact with Beverly).
■ You want up to date lists of relevant families on
the database who want contact.
■ You want information about a specific rare
chromosome disorder.
■ You have any queries about your database entry
■ You have been sent a database entry form and
you have any questions about it. (Please return
completed forms to Beverly).
■ You have any technical questions about medical or
genetic matters relating to your child’s disorder.
■ You would like any information on other matters
related to your child or yourself eg if you need an
address for other useful organisations.
■ Any queries relating to the Unique website.
■ You would like a piece included in the Unique
newsletter.
Beverly Searle – Chief Executive Officer
PO Box 2189, Caterham CR3 5GN, UK
Tel: +44 (0) 1883 330766
Email: Beverly@rarechromo.org
If you need to find out something and you can’t see it listed here,
please contact Beverly.
You should contact PRISCA if:
■ You would like any of our information leaflets on
specific rare chromosome disorders.
Prisca Middlemiss – Senior Information Officer
50 Heathfield Road, London W3 8EJ, UK
Tel: +44 (0) 20 8992 9933
Email: prisca@rarechromo.org
You should contact SATNAM
in Beverly’s absence:
Satnam Juttla – Information Officer
Tel: +44 (0) 203 114 5008
Email: satnam@rarechromo.org
You should contact SARAH
in Prisca’s absence:
Sarah Wynn – Information Officer
Tel: +44 (0) 203 211 1098
Email: sarah@rarechromo.org
You should contact JULIE if:
■ You would like to make a donation or need
information on how to run a fundraising event.
■ You would like to use the name Unique in any
literature.
■ You wish to send in fundraising monies and need
to ask questions or arrange a presentation.
■ You would like to serve on the Unique committee.
■ You know of a suitable organisation we can apply
to for funding.
■ You know a celebrity that can help us with
fundraising and awareness.
■ You would like copies of the annual
report/accounts or the 5 year strategy document.
■ You would like to run in the London marathon or
other similar event.
Julie Griffin – Finance and Fundraising Executive Officer
179 Bakers Ground, Stoke Gifford
Bristol BS34 8GE, UK
Tel: +44 (0) 117 979 8886
Email: julie@rarechromo.org
www.rarechromo.org
You should contact CRAIG if:
■ You have ideas or skills to help us to develop the
website or our presence on social networking
sites.
■ You think your employer may be able to help us
either financially or through gifts or other benefits
in kind.
■ You may be able to help us in some way
(however small) to raise awareness of Unique
through marketing, PR or the media.
■ You have any other skills which you feel may be
relevant as we develop Unique’s services and
capacity.
■ You have comments/suggestions about how the
group is run and the services offered.
Craig Mitchell – Operations Manager
Tel: +44 (0) 7753 566907
Email: craig@rarechromo.org
You should contact MARION if:
■ You haven’t yet received your welcome pack
(please allow up to 14 days from first contact
with Beverly).
■ You would like a copy of our Little Yellow Book or
Unique Tales (aimed at siblings).
■ You would like a back issue of the newsletter.
■ You would like to become a Local Contact for
your area or you have any questions about
becoming a local contact.
■ You would like a form for a sponsorship event.
■ You are already a Local Contact but you need
some more leaflets/posters, etc.
■ You would like any fundraising/publicity items,
eg balloons, leaflets, posters, etc.
■ You would like a Unique collection pyramid or
you have any questions related to the collection
pyramids.
■ You have any questions relating to the Unique
conference.
■ You have any questions regarding equipment
(wheelchairs, buggies, trikes, seating, etc).
■ You cannot get in touch with Beverly and your
enquiry is urgent eg if Beverly is on holiday.
Marion Mitchell – Family Support Officer
6 Lavant Close, Gossops Green
Crawley RH11 8LN, UK
Tel: +44 (0) 1293 525504 Skype: uniquemaz15
Email: marion@rarechromo.org
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