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
MEN2B Patient Experience Project
We are due to produce a film about MEN2B(3) in early 2019. The film will have 3 purposes: 1) inform patients and carers; 2) raise awareness of early signs to lower average age of diagnosis; 3) raise awareness of genetic endocrine syndromes on relevant awareness days. Keep an eye on our website!
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)
European MEN Alliance (EMENA)
EMENA is an alliance of patient groups throughout Europe providing support and information to families affected by MEN disorders. AMEND is a founding and active member. Learn more about EMENA and our joint projects.