LINKS
"Progeria Worldwide"
Forschung
Research - Recherche
Investigación
www.dgfa-aging.de
Natural science and medical scientists met in February 1990 in order to
found the German Association for the Research of Aging (DGfA). The results
of their work will be published or presented at seminars. Interdisciplinary
groups will also use these results as the basis for continued discussions.
www.gesundheitsberater.de
www.lifeline.de
www.thieme.de
www.biofeedb.ac.at
'Progerie im Lexikon'
www.bio-net.de
A source of information for biological and alternative medicine and health.
OMIM: Online Mendelian Inheritance in Man
This database is a catalogue of human genes and genetical orders. The
authots are Dr. Victor A. McKusick and his colleagues at the Johns Hopkins
Institute. The developed the global network for the National Center for
Biotechnical Information (NCBI). The database contains texts, pictures
and references.
www.progeriaresearch.org/researchPublications/publications.htm
Here you can find a collection of over 100 medical publications about
"Progerie".
Rare Genetic Diseases In Children:
The Rare Disease Catalogue - an extensive listing of organisational and
personal websites, which focus on specific genetic diseases and families
of diseases. This extraordinary disease ctatlogue is divided into seven
major catagories. They include specific and chromosomic subcatagories.
MedExplorer.com
A source of information for medicine and health. This website supplies
current news about the disease.
Medical Personnel / Contact
Belarus
Dr. med. Natallia Rumiantsava and Dr. med Irina Naumchik, Institute for
Rare Genetic Diseases, Minsk
E-Mail: cormay@open.by
Germany:
PD Dr. Thorsten Marquardt
Universitätskinderklinik
Albert-Schweitzer-Str. 33
48149 Muenster, Germany
marquat@uni-muenster.de
http://cdg.uni-muenster.de
+49 251 835 8519
Prof. Dr. med. Wolfgang Kuester
TOMESA-Fachklinik, Bad Salzschlirf, Germany
www.tomesa.de
Priv. Doz. Dr. med. Peter Meinecke
Altonaer Kinderkrankenhaus, Hamburg, Germany
www.altonaer-kinderkrankenhaus.de
Dr. med. Vinzenz Mansmann
Chefarzt Naturmed-Klinik, Bad Waldsee, Germany
www.naturamed.de
Serbia:
Dr. med. Miroslav Dedovic
PROFACI in Belgrad, Serbia
E-Mail: dedovic@eunet.yu
Turkey:
Dr. med. Nursel Elcioglu in Istanbul,Turkey
E-Mail: nelcioglu@hotmail.com
Hilfreiche Menschen und Organisationen
Helpful organizations- Organisations utiles
Organizaciones provechosas
www.sunshinefoundation.org
The "Sunshine Foundation" (The "Original Dream Makers")
fulfills all of the dreams of children with chronic diseases. Included
are the diseases spina bifida, muscular dystrophy, Sichel-Cell-Anemia,
AIDS, cancer, Progeria and many more...
Hutchinson-Gilford Progeria
Syndrome Resource Center
As one of the very first sites with information about "Progerie",
the HGPS is a source of onformation about connections, pictures and a
discussion forum about "Progerie".
www.progeriaresearch.org
The "Progeria Research Foundation" wants to increase interest
in Progerie research. The want to finds ways to research the cause of
the disease.
www.bkmf.de
From the "Bundesverband Kleinwuechsiger Menschen und ihrer Familien
e.V." you can receive information and help about other symptoms with
restricted-growth diseases.
Bundesselbsthilfeverband Kleinwuechsiger
Menschen e.V.
BKMF Austria
Swiss Elternverein Kleinwuechsiger Kinder
Vereinigung kleiner Menschen in Switzerland
Restricted Growth Association
British self-help organization
Short Statured People of Australia
Belangenvereniging Van Kleine Mensen
Dutch self-help organization.
Association
Belge des Personnes de petite Taille
Belgium self-help organization
Grandir
- Association des Parents d'Enfants ayant des Problèmes de Croissance
French self-help organization
Association des Personnes de Petite
Taille
French self-help organization
Landsforeningen for væksthæmmede
Danish self-help organization
Föreningen För Kortvuxna
Swedish self-help organization
Lyhytkasvuiset - Kortväxta
ry
Finnish self-help organization
www.crecimiento.org
Spanish self-help organization:
- Asociatión Nacional para Problemas de Crecimiento
- Fundación Crecimento y Desarrollo
www.selbsthilfe-online.de
An internet project of the Bundesarbeitsgemeinschaft Hilfe für Behinderte
e.V. (BAGH) and the Interessenvertretung Selbstbestimmtes Leben e.V. (ISL)
www.wernerschell.de
Homepage with forum concerning medical and workplace legal questions
www.eurordis.org
European Organization for Rare Disorders
orphanet.infobiogen.fr
Database for rare diseases and orphan medications
kindernetzwerk.de
Kindernetzwerk e.V. supports parents with children/adolescents who are afflicted
with a chronic disease or are handicapped or suffer from a rare disease.
nakos.de
NAKOS - Nationale Kontakt- und Informationsstelle for the advancement and
support of self-help groups
Institute People, Ethic and Science
Aktion Mensch
Special Sites
For Gamze
Hayley's Progeria Page
Here you can meet Hayley, a very special child with "Progeria",
and her family.
www.geocities.com/lori_and_ashley/
Here you can meet Ashley, also a very special child with "Progerie".
Welkom op de website van Michiel
Michiels Website
http://www.salem.mass.edu/imc/vietnam/congenital_deformities.html
A child from Vietnam with "Progerie"'.
Presse und TV
Press reports- Pressez rapports
Reportajes de prensa
www.geo.de
"Already Old As A Child": Article in GEO-Magazine, Edition No.
1, 4 March 1991, Germany
www.zeit.de
"Joscha Lives Faster": Article ZEIT-Magazine, Edition No. 35,
2 August 1997, Germany
A Special
Report about Twins with "'Progerie", USA
"Progeria-Reunion": Article about the Family Meeting, Edition
June 2000, USA
www.stern.de
"The Young Aged": Article about Sarah and Joscha, Edition No.
22, 23 May 2001, Germany
"Burton Report":
Article about Danny from England
www.ndr.de
"Forever Young": A 2-part documentary film about "Aging"
and its causes (Progerie), TV station NDR3: 'PRISMA', 1994 by Oliver Tolmein,
Germany
www.RTL2.de
"Children at High Speed": First documentary film in Europe about
the topic of "Progerie" and affected European families, TV station
RTL2: 'Exclusive - Die Reportage', 1997 by Barbara Koch, Germany.
"Before
Their Time": documentary film about Ashley, TV Ontario, 1997 by David
Way, Canada
www.zdf.de
"Children and Death": documentary film about European "Progeria
families" and the European Meeting in the Netherlands, TV station
ZDF: 'MONA LISA', Dezember 1998 by Martina Morawietz, Germany
www.mdr.de
"Aging Children": documentary film about a child with "Progerie"
from Rumania, TV station MDR: 'BRISANT', 19 September 2000, Germany (Rumania)
www.sfdrs.ch/dok
"Sabrina - Too Young to be So Old": documentary film about Sabrina
from Switzerland, TV station '3SAT', 23 May 2001 by Elsbeth Leisinger,
Switzerland
You can look for
other documentation about "Progerie" here.
Here
you can find the BBC-Documentation about "Progerie".
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