The European Union needs to play a stronger role in coordinating research into new drugs and should help produce a code of ethics for trials, health officials said last week.
Without a European approach to ethics and testing, patients may have a weaker voice in deciding which diseases are targeted, they argued.
Fragmentation and poor communication among patient groups are major problems for sufferers of rare diseases. Such groups often rely on EU-funded projects to coordinate their work and try to develop common standards for clinical trials.
"Funding for patient groups is needed in order for them to be less dependent on pharmaceutical companies, avoiding conflicts of interest," said Cor Oosterwijk, director of the Dutch Genetic Alliance (VSOP).
Greater patient involvement would increase accountability in the production of new drugs and improve the likelihood of rare, "forgotten" diseases such as multiple sclerosis being treated, he said.
Oosterwijk was speaking at a conference in Brussels last Tuesday/Wednesday (7/8 December) organised by the Patient Partner group, an alliance of 150 patient organisations across the EU.
Patient Partner is drafting a Europe-wide code of ethics for partnership between patient organisations and other stakeholders in clinical research, but health officials warned they will run out of money before the job is done.
Sufferers simply don't have the tools to influence the drug-development process, said Ingrid Klingmann of the European Forum for Good Clinical Practice, who is in charge of drafting the code.
Research in Ireland showed that patients were more likely to participate in clinical trials when they were well informed about the country's ethics code for testing and other information.
No Europe-wide standard currently exists for clinical trials or research, wasting resources and slowing down the development of medicines. This is a particular concern in Eastern Europe, where the number of trials is increasing more than elsewhere.
However, some argue that creating an EU standard to receive funding could create a dual-track system of testing where trials that fail to meet the standard could be labelled "illegal". This could lead to greater risks for patients, who would still be willing to take part in poorly-funded tests, participants admitted.
Regardless, awareness-raising is seen as key to giving sufferers the chance to take part in trials to potentially develop the right drugs to save lives.
"The demand is there," Klingmann said.