This page contains organizations which do not have an Internet website. For a larger list of resources (including all of these) see our Links page.
Niemann-Pick Disease Group(UK) A registered charity within the UK providing information and support
to families and professionals worldwide regarding all types of
Niemann-Pick disease. Regular Newsletter, Telephone Helpline, Annual Conference and
Regional Meetings.
For further information and support please contact:
Susan Green
Family Support Co-ordinator
Niemann-Pick Disease Group (UK)
Kingslaw House
East Wemyss
Fife KY1 4RS
UK
Phone/fax: 44 1592 580672
email: niemann-pick@zetnet.co.uk website: (A HREF="http://www.nnpdf.org/npdg-uk">www.nnpdf.org/npdg-uk
Donations to the Niemann-Pick Disease Group (UK) may be sent to:
Tony Jellings
National Fund-raising Coordinator
Chichester House
Chichester Terrace
Brighton BN21FN
E. Sussex
UK
Phone/fax: 44 1273 609535
Cheques should be made payable to "The Niemann-Pick Disease Group (UK)".
Contacts in Germany should use this address:
Gerda Fabianski
Uhlandstrasse 16
D-71106 Magstadt
Phone/fax: 49 7159 43969
website: www.niemann-pick.de
Universita' degli Studi di Bologna . Clinica Neurologica e Lab. Neurogenetica
Via U. Foscolo 7 - 40123 - Bologna
Phone: 051/6442156
Fax: 051/6449053
Resp.: S. Sangiorgi - M. Mochi - E. Lugaresi
Indagini di biologia molecolare per:
Distrofia miotonica di Steinert
Atassia spino cerebellare 1 (SCA1)
Atassia spino cerebellare 3 (SCA3)
Leucodistrofia metacromatica
Atrofia dentato rubrale pallido luisiana (DRPL)
Kennedy Malattia di
Melas Sindrome di
Merrf Sindrome di
Leigh Sindrome di
Atrofia ottica di Leber
Martin-Bell Sindrome di - Sindrome dell' X fragile (FRAXA)
Niemann-Pick Malattia di
Children's Wish Groups These groups fulfills wishes for children with life threatening illnesses, such as Niemann-Pick.
Children's Hopes and Dreams Foundation
280 Rt 46
Dover NJ 07801
Phone: (201) 361-7366
Fax: (201) 361-6627
Also has a pen pal program
The Dream Factory
315 Guthrie Dr
Louisville KY 40202
Phone: (800) 456-7556
Grant A Wish Foundation
PO Box 21211
Baltimore MD 21228
Phone: (800) 933-5470
Lisa Madonna Memorial Fund
409 Beloit
Forest Park IL 60130
Phone: (708) 366-2057
Medical Air Transportation The National Patient Air Transport Hotline (NPATH)
This hotline makes referrals to all known appropriate charitable, charitably-assisted, and special patient discount commercial services based on an evaluation of the patient's condition, type of transport required, and departure/destination locations. Patient referrals are made to over 45 sources of air medical transport help.
Phone: (800) 296-1217
The "Special Lift" Air Medical Transport Program
Operated in conjunction with NPATH, this program will manage and coordinate the air medical transportation of patients in large scale disease research or experimental treatment programs. The program moves large numbers of special project patients to and from special research or treatment facilities, one at a time, as required.
Phone: (800) 296-1191
American Bar Association Children's SSI Project The ABA has compiled a list of hotline numbers for free legal assistance, including local referral numbers, free legal help and in some cases, probono legal services. For your local number, call the Social Security Administration and ask about the ABA Children's Project.
Phone: (800) 772-1213
A.R.C. Advocacy, support, education for persons with developmental disabilities.
Phone: (800) 433-5255
Centering Incorporation Educational material for a variety of life adjustment issues.
Phone: (402) 553-1200