Volume 7; Issue 2 Suppleme

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Orphanet Journal of Rare Diseases
Volume 7; Issue 2 Suppleme

Orphanet Journal of Rare Diseases

Volume 7; Issue 2 Suppleme

1

Speeding up research with the Semantic Web

Marco Roos, Erik A Schultes, Barend Mons

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 87 KB

english, 2012

2

The involvement of patients in developing clinical guidelines

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 86 KB

english, 2012

3

Training medical students on rare disorders

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 87 KB

english, 2012

4

HTA on neonatal screening for rare metabolic disorders faced misconceptions and blurred objectivity

Ilona Autti-Rämö

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 94 KB

english, 2012

5

Fighting for the cures of rare genetic diseases: worthy ideas and promising results demand for strategic research management and for integration of competences and efforts

Francesca Sofia

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 73 KB

english, 2012

6

Value and specificity of rare diseases business model-is the pursuit of this societal priority sustainable?

M Dunoyer, P Rollet

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 77 KB

english, 2012

7

State of the art of rare disease activities around the world: overview of the non-European landscape

Durhane Wong-Rieger

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 76 KB

english, 2012

8

A coordinated EU approach to informed access decisions: CAVOD process proposals – the possibility to turn concept into reality?

Wills Hughes-Wilson

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 77 KB

english, 2012

9

The second French plan for rare diseases 2011-2014

Alain Garcia, Christel Nourissier

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 86 KB

english, 2012

10

Leveraging existing opportunities for improved Orphan Drug approval in the EU

Catarina Edfjäll

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 82 KB

english, 2012

11

The psychological processes involved in patient empowerment

Isabelle Aujoulat, Bridget Young, Peter Salmon

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 100 KB

english, 2012

12

European Reference Networks: developing a EUCERD opinion

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 82 KB

english, 2012

13

From rationing to rationality: an n-of-one trial service for off-label medicines for rare (neuromuscular) diseases

Stephanie S Weinreich, Charlotte Vrinten…

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 77 KB

english, 2012

14

The political empowerment of rare disease patient advocates both at EU and national level

Terkel Andersen

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 84 KB

english, 2012

15

Transition from childhood to adulthood in Duchenne muscular dystrophy (DMD)

Sunil Rodger, Birgit F Steffensen, Hanns Lochmüller

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 97 KB

english, 2012

16

The democratic problem in the knowledge society of today: Rare Disorders Denmark’s documentation strategy

Ane Lind, Lene Jensen, Birthe B Holm

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 76 KB

english, 2012

17

Developing a cure for Black Bone Disease

Nicolas T Sireau

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 95 KB

english, 2012

18

First German Academy for Further Medical Training on Rare Diseases (FAKSE, http://www.fakse.info)

Julia Giehl, Holm Graessner, Olaf Riess

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 93 KB

english, 2012

19

Patient perspective on CT Involvement: are they listening to my needs?

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 86 KB

english, 2012

20

Classification and coding of rare diseases: overview of where we stand, rationale, why it matters and what it can change

Peter N Robinson

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 76 KB

english, 2012

21

Listening to children’s and parents’ voices: using patient reported outcomes to empower patients with orphan diseases and their parents

Linda Abetz-Webb

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 104 KB

english, 2012

22

State of the art of rare disease activities in Europe: a EUCERD perspective

Ségolène Aymé

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 336 KB

english, 2012

23

National plans: case study Belgium

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 82 KB

english, 2012

24

Scope of centres of expertise for rare diseases in European countries where they exist

Charlotte Rodwell,Ségolène Aymé,Kate Bushby

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 82 KB

english, 2012

25

Can the cross-borders directive improve the quality of genetic testing in the future?

Jean-Jacques Cassiman

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 80 KB

english, 2012

26

Developing a national plan for rare diseases in Germany through concerted action: the national action league for people with rare diseases

Véronique Héon-Klin,Alexandra Halbach…

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 152 KB

english, 2012

27

Professional clinical guidelines for rare diseases: methodology

Odile Kremp,Patrice Dosquet,Ana Rath

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 80 KB

english, 2012

28

How reference networks develop, implement, and monitor guidelines

Jan Kirschner,Sunil Rodger,Julia Vry…

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 77 KB

english, 2012

29

The Italian project to increase health professionals’ training and awareness on rare diseases

Simona Bellagambi

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 76 KB

english, 2012

30

Spina Bifida and primary prevention

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 84 KB

english, 2012

31

Finding new medicines to fight CF: multiple steps of a success story

Margarida D Amaral

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 103 KB

english, 2012

32

Exon skipping for DMD

Annemieke Aartsma-Rus,Jan JGM Verschuuren…

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 98 KB

english, 2012

33

EPIRARE survey on activities and needs of rare disease registries in the European Union

Domenica Taruscio,Sabina Gainotti,Luciano Vittozzi…

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 76 KB

english, 2012

34

Mechanism of coordinated access to orphan drugs

R DeRidder,C Adriaens,D Kleinermans,M Mortier…

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 108 KB

english, 2012

35

Market access of orphan drugs and the role of multi-criteria decision making

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 75 KB

english, 2012

36

Compassionate use programmes for rare diseases: proposals for actions

François Houÿez,Chantal Bélorgey,Arielle North…

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 79 KB

english, 2012

37

The emergence of the cause of rare diseases and rare disease patients’ movement

Caroline Huyard

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 86 KB

english, 2012

38

Rare family days: a family empowerment programme

Ane Lind,Lene Jensen,Birthe B Holm

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 74 KB

english, 2012

39

Climb’s black and ethnic minority information project (BEMIS)

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 87 KB

english, 2012

40

Is more involvement needed in the clinical trial design & endpoints?

Elizabeth Vroom

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 76 KB

english, 2012

41

A route map for the patients journey

Journal:

Orphanet Journal of Rare Diseases

Year:

2012

Language:

english

File:

PDF, 86 KB

english, 2012

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