First German Academy for Further Medical Training on Rare Diseases (FAKSE, http://www.fakse.info).
- Published in:
- 2012
- By:
- Publication type:
- Abstract
Works matching IS 17501172 AND DT 2012 AND VI 7 AND IP Suppl 2
Results: 41
1
2
A route map for the patients journey.
- Published in:
- 2012
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- Abstract
3
Patient perspective on CT Involvement: are they listening to my needs?
- Published in:
- 2012
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- Abstract
4
Is more involvement needed in the clinical trial design & endpoints?
- Published in:
- 2012
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- Abstract
5
Developing a cure for Black Bone Disease.
- Published in:
- 2012
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- Abstract
6
Climb's black and ethnic minority information project (BEMIS).
- Published in:
- 2012
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- Abstract
7
The democratic problem in the knowledge society of today: Rare Disorders Denmark's documentation strategy.
- Published in:
- 2012
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- Abstract
8
Rare family days: a family empowerment programme.
- Published in:
- 2012
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- Abstract
9
The political empowerment of rare disease patient advocates both at EU and national level.
- Published in:
- 2012
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- Abstract
10
The emergence of the cause of rare diseases and rare disease patients' movement.
- Published in:
- 2012
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- Abstract
11
The psychological processes involved in patient empowerment.
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- 2012
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- Abstract
12
Listening to children's and parents' voices: using patient reported outcomes to empower patients with orphan diseases and their parents.
- Published in:
- 2012
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- Abstract
13
From rationing to rationality: an n-of-one trial service for off-label medicines for rare (neuromuscular) diseases.
- Published in:
- 2012
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- Abstract
14
Compassionate use programmes for rare diseases: proposals for actions.
- Published in:
- 2012
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- Abstract
15
Leveraging existing opportunities for improved Orphan Drug approval in the EU.
- Published in:
- 2012
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- Abstract
16
Market access of orphan drugs and the role of multi-criteria decision making.
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- 2012
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- Abstract
17
A coordinated EU approach to informed access decisions: CAVOD process proposals - the possibility to turn concept into reality?
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- 2012
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- Abstract
18
Mechanism of coordinated access to orphan drugs.
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- 2012
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- Abstract
19
Value and specificity of rare diseases business model-is the pursuit of this societal priority sustainable?
- Published in:
- 2012
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- Abstract
20
EPIRARE survey on activities and needs of rare disease registries in the European Union.
- Published in:
- 2012
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- Abstract
21
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.
- Published in:
- 2012
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- Abstract
22
Exon skipping for DMD.
- Published in:
- 2012
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- Abstract
23
Finding new medicines to fight CF: multiple steps of a success story.
- Published in:
- 2012
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- Abstract
24
Spina Bifida and primary prevention.
- Published in:
- 2012
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- Abstract
25
HTA on neonatal screening for rare metabolic disorders faced misconceptions and blurred objectivity.
- Published in:
- 2012
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- Publication type:
- Abstract
26
The Italian project to increase health professionals' training and awareness on rare diseases.
- Published in:
- 2012
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- Abstract
27
Training medical students on rare disorders.
- Published in:
- 2012
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- Abstract
28
How reference networks develop, implement, and monitor guidelines.
- Published in:
- 2012
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- Abstract
29
The involvement of patients in developing clinical guidelines.
- Published in:
- 2012
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- Abstract
30
Professional clinical guidelines for rare diseases: methodology.
- Published in:
- 2012
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- Abstract
31
Speeding up research with the Semantic Web.
- Published in:
- 2012
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- Abstract
32
Classification and coding of rare diseases: overview of where we stand, rationale, why it matters and what it can change.
- Published in:
- 2012
- By:
- Publication type:
- Abstract
33
Developing a national plan for rare diseases in Germany through concerted action: the national action league for people with rare diseases.
- Published in:
- 2012
- By:
- Publication type:
- Abstract
34
Transition from childhood to adulthood in Duchenne muscular dystrophy (DMD).
- Published in:
- 2012
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- Abstract
35
Can the cross-borders directive improve the quality of genetic testing in the future?
- Published in:
- 2012
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- Abstract
36
European Reference Networks: developing a EUCERD opinion.
- Published in:
- 2012
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- Publication type:
- Abstract
37
Scope of centres of expertise for rare diseases in European countries where they exist.
- Published in:
- 2012
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- Abstract
38
The second French plan for rare diseases 2011-2014.
- Published in:
- 2012
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- Publication type:
- Abstract
39
National plans: case study Belgium.
- Published in:
- 2012
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- Abstract
40
State of the art of rare disease activities around the world: overview of the non-European landscape.
- Published in:
- 2012
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- Publication type:
- Abstract
41
State of the art of rare disease activities in Europe: a EUCERD perspective.
- Published in:
- 2012
- By:
- Publication type:
- Abstract