AMEND believes that patients and healthcare professions should work together to improve care for patients and spread awareness of these rare conditions to aid earlier diagnosis. We have a number of ways we do this. Importantly, AMEND is supported in its work by an expert Medical Advisory Team, and includes healthcare professionals on its Trustee Board. We are enormously grateful that these individuals give of their limited time freely to help ensure that AMEND’s information resources and support services are up-to-date and fit for purpose.
Explore some ways that we can work together below:
Medical Conference Participation – AMEND has presented at a wide range of national and international medical conferences since its inception in 2002. Patient experience talks can have a particularly impactful, but other issues and insights can be addressed as required. Contact AMEND to discuss your ideas.
Medical Training Input – AMEND staff and patients are often involved in talking or lecturing to medical students. Contact AMEND for further information.
“Thanks so much for your lecture for the MSc students on Friday. The students were bowled over – I wasn’t quite prepared for how meaningful they were going to find it; thank you so much”
“Our visitor was exceptionally eloquent and knowledgeable about their condition. They made us all feel so comfortable asking questions, and I felt so engaged with her through her talk and discussion about her condition”
Patient Voice – AMEND staff and volunteers provide the patient voice (PPV) in a range of settings, including for the National Health Service, European Union and individual and collaborative research projects. Contact AMEND for further information.