Position Papers / European Policy

EUROPEAN COMMISSION/EUROPEAN PARLIAMENT
Use of Animals in Cystic Fibrosis Medical Reasearh

General Statement

24.05.05
Use of Animals in Cystic Fibrosis Research
The Danish Cystic Fibrosis Association is well aware of public concerns about the use of animals in medical research. However, the appropriate and responsible use of animals
is an inindispensable part of biomedical research in general. Therefore, we support this use ...

Review of EU Directive 86/609 - Animal Protection

02.12.02
Animal Welfare - Protection of animals used for experimental and other scientific purposes
"The use of animals in medical research is an important tool in the development of new medicines for human use.  It also results in new veterinary products being made available for relief of animal health problems ...."

28.10.02
Protection of animals used experimental and other scientific purpose
"When using animals for biomedical research its intention is to develop knowledge that will result in new and improved treatments for diseases that are currently incurable or intractable ...."

EUROPEAN COMMISSION/EUROPEAN PARLIAMENT
Medicinal Products for Paediatric Use

Regulation on Medicinal Products for Paediatric Use

21.05.05
European Commission’s Proposal for a Regulation on Medicinal Products for Paediatric Use
No parent wants to see their children suffer from serious diseases for which there is no cure. Yet no parent wants to see their child being used as a “guinea pig” in uncontrolled biomedical research. Without research children will continue to suffer, yet research undertaken on children must respect and protect their vulnerability.

DG Enterprise Consultation - Better Medicines for Children

29.04.02
Better Medicines for Children
There are seventy-five million children in the European Union all under the age of sixteen, who are at risk when taking medicines. Fifty to ninety (in neonates) percent of the available medicines have not been tested for safe use in children and consequently lack information on safe and effective use. “Children do at least deserve as much attention and carefulness as do adults”

 

 

EUROPEAN PARLIAMENT
Pharmaceutical Legislation Review 2001
Information to patients

17.10.02
Access to information about prescription medicines is further restricted
"Access to information about prescription medicines is further restricted!
Great disappointment for patients as result of the vote in the Environment Committee on the Grossetęte and Müller reports 2 October ...."

07.09.02
Pharmaceutical Legislation Review 2001, Information to Patients
"With a view to the discussion and vote in the Committee on the Environment, Public Health and Consumer Policy on the review of pharmaceutical legislation, and especially on information to patients (art. 86-100), we urgently would like to ask your support for the following ...."

14.05.02
CF-Patients demand access to information for ALL disease areas in Europe
"Cystic Fibrosis patients believe that ALL patients, no matter their condition, background or nationality, have a fundamental and legitimate human right of access to all kinds of information about their health, medical conditions and the availability of treatments including knowledge of the best available management for their disease. 
It is a question of solidarity, equity and patients’ rights ...." 

24.02.02
We would like equal access to information for ALL patients in Europe
"Patients with Cystic Fibrosis do not believe in the American style drug advertising. We would like equal access to information for ALL patients in Europe" ....

 

 

EUROPEAN PARLIAMENT
Temporary Committee on Human Genetics and other new Technologies in Modern Medicine 2001

28.11.01
Stem Cell Research, Therapeutic Cloning and Embryo Status
"Therapeutic cloning holds promise for development of future successful treatment of patients suffering from severe life-threatening diseases for which no cure exists thus far ...."

21.04.01
Population (carrier) screening for Cystic Fibrosis
"Cystic Fibrosis is the most common inherited life threatening disorder, caused by a defect in one single gene. Although advances in disease management have improved significantly during the past 30 years the life expectancy of CF-patient is reduced – CF children and adults still die prematurely from Cystic Fibrosis ...."

09.01.01
Research involving human embryonic stem cells
"Research in stem cells could revolutionise and improve the way new drugs and tests are developed particularly as regards safety and efficacy – and will greatly affect all areas of medical treatment for the benefit of European Patients ...."

 

 

EUROPEAN PARLIAMENT
The EU Directive on Legal Protection
of Biotechnological Inventions

11.05.98
Patents are important to patients!
" For many people suffering from severe disorders and diseases like heart and lung diseases, HIV and AIDS, cancer and sclerosis etc. the biotechnology contains so much hope and so many possibilities for research and development into causal treatment either via gene therapy or traditional pharmacological approaches ...."