AMEND has a number of projects or work programmes on the go at any one time, although our own projects are subject to adequate funding.
Many of our projects include exciting activities for our members to get involved in, giving you a sense of being able to help others. Activities range from interactive workshops down to simple surveys. All are vital to ensuring that AMEND can provide the patient voice, as well as improve the resources and information that we offer.
Other work that we are involved in is to help to encourage better access to treatments for our patient communities. These include contributing to the commissioning of specialised services in the UK (Specialised Endocrinology Clinical Reference Group), or working with appropriate European Reference Networks to improve cross-border care and treatment of rare conditions (ENDO-ERN and EURACAN).
Click on a link below to find out more on our work and to see if there may be something that you or a family member or friend may like to be involved in!
UK Regional Support Groups & Volunteers
New from the middle of 2018, our trained Regional Volunteers will be organising and facilitating regional support meetings around the UK. Click here to learn more
Project Rollercoaster for Young Adults
Taking a look at the issues and concerns of young adults during a potentially difficult period of life which includes transition between child and adult health services.
MEN2B Patient Experience Project
New for 2018 is the proposed development of a new video about MEN2B. If you are interested in being involved and live in the UK, please contact Jo Grey.
An exploration of research into neuroendocrine tumours (NETs) and their genetic syndromes in the UK, in collaboration with the NET Patient Foundation. More information coming soon.
Specialised Endocrinology Clinical Reference Group (A03 CRG) - UK
Information is coming soon. Click here to go to the CRG website
European Reference Networks (ENDO-ERN and EURACAN)
Information is coming soon. Click here to go to the ERN website