Patients in the UK are set to miss out on ground breaking and potentially life-saving clinical trials in the event of the UK leaving the EU. This is especially significant for millions of people living with a form of rare disease, where clinical trials can be their only lifeline to treatment.
It's a view shared by many of my medical and science colleagues, as well as a number of health charities and patient groups.
These clinical trials are routinely placed across multiple countries across Europe, including in the UK.
From the newest innovations in treatments from cancer to dementia to HIV, UK patients have gained significant benefit from the increasing number of global clinical trials available to them in the UK.
Industry sponsored trials in the UK are also increasing. We have seen a 35 per cent increase in patient participation in industry sponsored trials with 25,000 patients taking part in 2013/2014.
For some patients, access to these trials provides the only access to treatments where no therapy currently exists. These patients include those living with rare cancers, such as childhood cancers, as well as diseases like cystic fibrosis and Huntingdon's Disease.
Leaving the EU could see the UK lose its place to other European countries as a place to trial new medicines.
Companies would be likely to defer placing trials in the UK until after they had placed them in the EU due to having to use a different approval process. For trials in small population sizes, like those for rarer diseases, patients from the EU would take up the places long before patients in the UK got a look in.
It's not just patients who stand to lose out. We could see a fall in collaboration between UK scientists, academics and doctors and their European counterparts.
Much has been debated in the media and elsewhere about the negative impact of the European Clinical Trials Directive.
While there is recognition and acceptance that the Clinical Trials Directive did not deliver what was hoped, much needed reform has now given us the framework we need for better collaboration in Europe.
It will also provide harmonisation within the EU clinical trial environment, through a single approval system for multi-country trials.
The Clinical Trials Regulations are one example of how Brussels has listened to and worked with our industry to cut red tape.
Leaving the EU would not be beneficial for patients living in the UK, and would be a real blow to some of the 3.5million children and adults in the UK with a form of rare disease.
To suggest that these patients would benefit from Brexit is wrong.
The 8th European Conference on rare diseases and orphan products takes place from 26 to 28 May 2016 at the Edinburgh International Conference Centre, Edinburgh.
www.rare-diseases.eu or see the #ECRD2016 on twitter