Patient engagement

As an organisation we would like to set up the foundations for effective collaboration with patient organisations.

This may include;

• educating on what ATMPs are with real world examples of medicines developed in Sweden/in trial/market approved
• bring in as many patient foundations as possible to discuss setting up a platform where patients/public can find information about ATMP clinical trials and ask questions about unproven therapies or stem cell tourism. Examples…
  • My Cancer Navigator: information service for people with cancer | Anticancer Fund
  • Clinical Trials in the European Union – EMA (europa.eu)
  • CIRM – California’s Stem Cell Agency
  • Welcome to your home for Gene and Cell Therapy Information | EuroGCT
• establish a ’buddy’ system where we have an ATMP ambassador for each patient foundation who provides a yearly update on what is happening in the space
  • couple to companies developing in the space – medicine design, valuable clinical outcomes
• establish a patient registry where individuals can submit their interest to be consulted about medicine development relevant to them. This would be a bit of a match making service to ensure that the volume of patient perspectives needed are engaged

Number 2 and 4 would need funding…

If you are interested to be involved in any of these activies or would like to suggest alternatives, please get in touch!