Volume 5; Issue 1 Suppleme

Orphanet Journal of Rare Diseases

Volume 5; Issue 1 Suppleme
1

Living with OI = Osteogenesis imperfecta = brittle bone disease

Year:
2010
Language:
english
File:
PDF, 179 KB
english, 2010
3

Very rare disorders -organisation of care

Year:
2010
Language:
english
File:
PDF, 175 KB
english, 2010
5

Wilson France: a national database for Wilson’s disease

Year:
2010
Language:
english
File:
PDF, 180 KB
english, 2010
9

The European research area network – E-Rare

Year:
2010
Language:
english
File:
PDF, 178 KB
english, 2010
11

Health technology assessment: oncology drugs with orphan designation as an example

Year:
2010
Language:
english
File:
PDF, 179 KB
english, 2010
13

State of the art of services in Europe: where are the problems?

Year:
2010
Language:
english
File:
PDF, 177 KB
english, 2010
14

Cross-border genetic testing

Year:
2010
Language:
english
File:
PDF, 178 KB
english, 2010
15

Ageing in rare, chronic diseases

Year:
2010
Language:
english
File:
PDF, 175 KB
english, 2010
16

The added value of centres of expertise for rare disease patients in Europe

Year:
2010
Language:
english
File:
PDF, 176 KB
english, 2010
17

Contribution of rare disease patient organisations to medical education

Year:
2010
Language:
english
File:
PDF, 143 KB
english, 2010
18

Building centres of expertise according to the Dutch model?

Year:
2010
Language:
english
File:
PDF, 176 KB
english, 2010
20

Cross-border health care represents a key issue in the field of rare diseases

Year:
2010
Language:
english
File:
PDF, 179 KB
english, 2010
23

Cross-border healthcare? The Polish experience

Year:
2010
Language:
english
File:
PDF, 176 KB
english, 2010
26

Cystic Fibrosis in Europe - remote measurement of outcome

Year:
2010
Language:
english
File:
PDF, 181 KB
english, 2010
29

Social profiles - a dialogue tool

Year:
2010
Language:
english
File:
PDF, 178 KB
english, 2010
30

A "Family Project" to fight Usher, a rare disease leading to deaf-blindness

Year:
2010
Language:
english
File:
PDF, 179 KB
english, 2010
33

The Epidermolysis bullosa house in Salzburg

Year:
2010
Language:
english
File:
PDF, 178 KB
english, 2010
38

Determinants for research on rare diseases

Year:
2010
Language:
english
File:
PDF, 175 KB
english, 2010
41

The German plan for rare diseases: a development in progress

Year:
2010
Language:
english
File:
PDF, 178 KB
english, 2010
42

Predictors of orphan drug approval

Year:
2010
Language:
english
File:
PDF, 178 KB
english, 2010
46

EMP's first steps in the field of clinical trials

Year:
2010
Language:
english
File:
PDF, 176 KB
english, 2010
47

Individual plans and coordinated services: an empowering process

Year:
2010
Language:
english
File:
PDF, 176 KB
english, 2010
48

Medical education: the role of patients

Year:
2010
Language:
english
File:
PDF, 174 KB
english, 2010
50

French experience with rare diseases plans

Year:
2010
Language:
english
File:
PDF, 178 KB
english, 2010
53

Patient involvement and empowerment through the NPRD (Eastern Europe)

Year:
2010
Language:
english
File:
PDF, 178 KB
english, 2010
54

Living with Progeria

Year:
2010
Language:
english
File:
PDF, 180 KB
english, 2010
59

E-learning for carers

Year:
2010
Language:
english
File:
PDF, 176 KB
english, 2010