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Familienettet: Dette er et nettsted for alle familier som har barn med nedsatt funksjonsevne enten det dreier seg om barn som har funksjonsvansker, funksjonshemming, psykiske vansker eller kronisk sykdom. http://www.familienettet.no/
Funksjonshemmedes Fellesorganisasjon (FFO) med sine 70 medlemsorganisasjoner som til sammen har mer enn 325.000 medlemmer, er FFO Norges største paraplyorganisasjon for organisasjoner av funksjonshemmede og kronisk syke.
FFO ble stiftet 21. september 1950. Foruten å bestå av 70 medlemsorganisasjoner er FFO organisert i landets 19 fylker, samt aktiv i rundt 100 kommuner.
http://www.ffo.no
Norges Handikapforbund (NHF) er en uavhengig interesseorganisasjon som arbeider for full likestilling og samfunnsdeltakelse for mennesker med funksjonsnedsettelse. Hovedmålgruppen er bevegelseshemmede.
http://www.nhf.no/
Felleskatalogen: Et oppslagsverk over legemidler på det norske markedet.
Stiftelsen for norske helse- og rehabiliteringsorganisasjoner (Norway)
http://www.helseogrehab.no/
International EB forum, medlemsbasert informasjons og E-post nettverk for helsepersonell.Mere inormasjon klikk her
Danish links:
DEBRA Denmark: http://www.eb-foreningen.dk/
Center for små handicapgrupper: http://www.csh.dk
Jonna Mathiasen's private hjemmeside: www.vabler.dk
Finnish links:
Debra Finland
http://www.iholiitto.fi/toimintamme/ebyhdistys.html
Iholiitto ry (THE CENTRAL ORGANISATION FOR SKIN DISEASED PEOPLE IN FINLAND): http://www.iholiitto.fi/
Swedish links:
DEBRA sweden: http://debra-sweden.org
Socialstyrelsens information om EB: http://sos.se/smkh
Genderamtoscentrum vid Akademiska sjukhsuet
http://www.uas.se/
Hjälpmedelsinstiutet: http://www.hi.se
Socialstyrelsen: små og mindre kända handikappgrupper (Sverige) Standardinformasjon om EB, med henvisning til ressurser i Sverige.
http://www.sos.se
Sällsynta diagnoser: http://www.sallsyntadiagnoser.nu
Mun-H-Center är ett nationellt orofacialt kunskapscenter:
www.mun-h-center.se
Internasjonale Linker:
debra International
http://www.debra-international.org
International EB forum, medlemsbasert informasjons og E-post nettverk for helsepersonell.Mere inormasjon klikk her
© Epidermolysis Bullosa Medical Research Foundation(EBMRF), is a volunteer, non-profit Foundation dedicated to helping medical scientists learn more about EB, its causes, the development of successful treatments, and ultimately, its cure.
http://www.ebkids.org/
Stanford School of Medicine:
http://dermatology.stanford.edu/gsdc/eb_clinic/eb-faqs.html
Free Medline access: www.ncbi.nlm.nih.gov/PubMed
Online Mendelian Inheritance Textbook: www.ncbi.nlm.nih.gov/Omim
American Academy of Dermatology Home Page: www.aad.org
Dermatology Online Atlas: www.dermis.net
Dermatology Image Atlas: www.dermatlas.med.jhmi.edu/derm/
The Network Epidermolysis bullosa (EB) is concerned with the causes, diagnosis, prophylaxis and treatment of EB, a group of inherited skin fragility disorders, which are characterized by trauma induced blisters of the skin and mucous membranes.
http://www.netzwerk-eb.de/e7/index_eng.html
EBnurse: When someone in your family has EB, you need help. This site contains up-to-date and practical information about EB and the treatment and care required to minimize the impact on the individual and family living with this disorder. You can find information and guidance on the many everyday
EB issues and challenges. This site is not only for families, but practitioners, too. http://www.ebnurse.org/
The European Wound Management Association (EWMA) was founded in 1991 to address clinical and scientific issues associated with wound management; represented by medical, nursing, scientific and pharmaceutical interests.
EWMA is an umbrella organisation linking wound management associations across Europe and a multidisciplinary group bringing together individuals and organisations interested in wound care. One of the most important ways EWMA reaches its objectives is by being an educational resource providing travel grants for novice practitioners (for educational purposes), conferences, information and publications on all aspects of wound care.
www.ewma.org/
Søster oganisasjoner i Norden:
Norsk Interessefaggruppe For Sårheling (NIFS): www.nifs-saar.no/
Dansk Selskab for Sårheling (DSFS): www.dsfs.org/
Finnland: www.suomenhaavanhoitoyhdistys.fi/
Island: www.sums-is.org/
Svenskt Sårläkningssällskap: www.sarlakning.se/
Sårsjuksköterskor i Sverige (SSiS), är en svensk förening för sjuksköterskor med intresse för sår och sårläkning ur ett professionellt och omvårdnadsvetenskapligt perspektiv: www.swenurse.se/sarsjukskoterskor
EBAN, The Epidermolysis Bullosa (“EB”) Action Network is a nonprofit charitable organization committed to accomplishing the following objective:To improve the financial quality and emotional stability of EB families.
http://www.EBANusa.org
EB info world, a lot of subjects concerning EB is covered here; medical information, stories, photos etc. Please note this is a personal homepage
http://www.ebinfoworld.com/http://ebworld.faithweb.com/
Welcome to the EB Awareness and News group, founded on 2/4/2008. Sister groups are available on MYSPACE, FACEBOOK, YAHOO, CAFEMOM and more at the following URLS:
http://www.myspace.com/ebawareness http://groups.myspace.com/ebworld
http://www.facebook.com/group.php?gid=16884589256
http://www.cafemom.com/group/6629
http://health.groups.yahoo.com/group/ebnews/
The MAIN Newslist is here:
http://lists.ebinfoworld.com/admindb.cgi/ebnews-ebinfoworld.com
Family Village: a global community of disability-related resources (USA)
http://www.familyvillage.wisc.edu
EBAN: The Epidermolysis Bullosa (“EB”) Action Network is a nonprofit charitable organization committed to accomplishing the following objective: To improve the financial quality and emotional stability of EB families.
http://www.ebanusa.org
TOMORROW THINK OF ME is a unique celebration blending music, art, luxury and solidarity - artists and artisans of international caliber - in three of the world's most cosmopolitan cities... Rome, New York City and Toronto.
The event was conceived by a cadre of three related charities, the Dystrophic Epidermolysis Bullosa Research Associations (DEBRA) of Italy, Canada, and the United States, with the generous pro bono support of Laura Rossi International, a PR agency dedicated to social justice. Our event's patroness is Eleonora Abbagnato, Prima Ballerina of the Paris Opera. She is joined by other high-profile patrons, including city mayors and others from around the globe. www.tomorrowthinkofme.org.
The new "Walk a Mile in My Shoes" campaign website will be "live" by the end of May, at www.mywalkamile.org. Tools will be continually added. The WAM campaign goes global this year, in recognition of our first-ever International EB Awareness Week. DEBRA orgs and EBMRF continue to partner with WAM in support of our week.
WALK A MILE IN MY SHOES, National Epidermolysis bullosa awareness -Relay-Rally. This event was endorsed by the
Dystrophic Epidermolysis Bullosa Research Association (DebRA) of America
and the Epidermolyis Bullosa Medical Research Foundation (EBMRF).
http://www.ebrelay.org/main.html
DEBRA International Research Grant Applications
http://www.debra-international.org/index.php?id=57
Nordic Council of Ministers (Nordiska Ministerrådet)
http://www.norden.org/web/sf4-bidrag//sk
Norges Forskningsråd
http://www.forskningsradet.no/utlysninger/soknad/
Stiftelsen for norske helse- og rehabiliteringsorganisasjoner (Norway)
http://www.helseogrehab.no/
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