The founder and director of Seriously Ill for Medical Research has died from a progressive genetic condition shortly after learning that he was to receive an MBE.
Andrew Blake, who suffered from Friedreich's ataxia, cannot receive the award posthumously, but before his death he welcomed the recognition of his cause.
He spent 11 years campaigning for the humane use of animals in medical science and was a vocal opponent to calls for a ban on testing.
SIMR was founded to give voice to sufferers of serious and incurable conditions. Mr Blake's work won him the admiration and support of many leading academics.
Lord Winston said: "His achievements, despite having his own severe disability, are an example to us all."
Simon Festing of the Association of Medical Research Charities said:
"Thousands of patients around the country owe a huge debt to Andrew for speaking up for ordinary people in support of medical research."