links-vernetzt-engl

Links

Links and information about Krankheit Niemann Pick C diseas:

Swiss Niemann-Pick Association www.npsuisse.ch
NPSuisse on Facebook www.facebook.com/niemannpick
NPSuisse on Twitter twitter.com/npsuisse
German Niemann Pick association www.niemann-pick.de
English Niemann Pick association www.niemannpick.org.uk
American Niemannn Pick association www.nnpdf.org
German Chronic Rare Disease Alliance: http://www.achse-online.de
Ara Parseghian Medical Research Foundation: http://www.parseghian.org
Universität von Notre Dame in Indiana, USA: http://niemannpick.nd.edu/
International Niemann-Pick Disease Alliance: http://www.inpda.org
Niemann-Pick Children's Fund: http://www.npcfund.org
Neurologische Abteilung, Zentrum Rosenhügel in Wien: http://www.niemannpickc.net
Klinik des Bezirks Oberpfalz (D): http://www.medbo.de
Infoseite von Actelion zu Niemann-Pick C: http://www.niemann-pick-c.com/
Blog about Pick C: http://www.immovingalong.blogspot.ch/

Websites von anderen betroffenen Kindern mit Niemann Pick C:

Hempel family (USA): www.addiandcassi.com
Fornfeist family (D): http://www.lili-npc.de
Carter family (UK):  http://hopeforhollie.co.uk
Hadley family with Peyton and Kayla: (USA) http://www.hadleyhope.com
Julia's Journey: (USA): (the first NPC-Patient in the NIH-Cylcodextrin-trail): http://www.juliasjourney.net
Stults family with Brisan and Parker: (USA)  www.bripardun.com
Reedy family with Chase: (USA) www.chasethecure.net und www.facebook.com/ChaseDiGiovanni
List of affected families: http://addiandcassi.com/category/about-np-c/list-of-families
The Children's Stories - University of Notre Dame: http://niemannpick.nd.edu/the-childrens-stories

Videos zum Thema Niemann Pick C:

Video of Mael on Youtube: View video
Television report about Mael and his "MAELS LEBEN" foundation on Central Swiss Television's Tele 1: View video
Television report about Mael on Tele Top: View video
Online campaign for rare disease with Mael: View video
Television report on Swiss television: View video
Living with NP-C: The Poincilit Family (Swiss family with three afflicted children): View video
The Poincilit Story - Life after NP-C Diagnosis: (Swiss family with three afflicted children): View video
Video of a family from the USA with two afflicted children: View video 
Video Hadley Hope Fund: Update 2012 (two children who are taking Cyclodextrin) (USA): View video
Video about Cyclodextrin use (USA): View video
Video about possible success with Cyclodextrin: View video
Video from the Ara Parseghian Medical Research Foundation/University of Notre Dame: View video 
Video about Prisan and Parker Stults, NPC patients (USA): View video
Video about Holly Carter, NPC patient (UK): View video
Video about Holly Carter, NPC patient (UK) long version: View video
Video about Annie. NPC patient (UK): View video

Websites zum Thema Seltene Krankheiten:

Allianz Seltener Krankheiten - Proraris: www.proraris.ch
Stiftung für Menschen mit seltenen Krankheiten: www.stiftung-seltene-krankheiten.ch
Blackswan Foundation: www.blackswanfoundation.ch
Orphanet: www.orpha.net

Other Links:

Our blog page, which has been on line since Mael's birth: www.oetterli.blogspot.com
Ponyhof Rämsiweid in Weggis: www.pferdestaerke.ch
Free photo sessions for families with seriously ill children: www.herzensbilder.ch- Herzensilder on Facebook
Clowns for kids in hospital: www.theodora.ch
Lustige Hausbesuche für Menschen mit Behinderungen oder schwerwiegende Erkrankungen: www.huusgloen.ch
Ferien- und Freizeitgestaltung für Mensche mit Behinderungen: www.denkanmich.ch
Forum über Kinder mit einer Einschränkung oder Behinderung: www.dasanderekind.ch
Website from Mattias Fries, Duchenne Muskeldystrophie: www.mattias.ch (bekannte Familie von uns)
Our web designer: www.rundumsweb.ch

Familie Oetterli | Breiteichlimatt 2 | 6044 Udligenswil | This email address is being protected from spambots. You need JavaScript enabled to view it.

template joomla