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.
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
Our trained Regional Volunteers will be continuing to organise and facilitate regular regional support meetings around the UK. Click here to learn more
- MEN2B Patient Experience Project
We produced 3 films about MEN2B(3) in early 2019. The films 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. Click here to view the films
- Research Roadshow
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.
- European Reference Network (ENDO-ERN)
- 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.
- ACC Support UK
This organisation is a joint project between AMEND and the NET Patient Foundation. Resources from both charities are used to inform and support anyone affected by Adrenocortical Cancer. Recent work includes 3 excellent films to highlight issues surrounding Diagnosis, Treatment and Living life with ACC. Click here to go to the ACC Support UK website.
- SDH Support UK
A 2020 project by AMEND to develop a new identity and community for families affected by SDH gene mutations that cause genetic syndromes of phaeochromocytomas and paragangliomas (amongst other tumours). A new booklet, website and patient experience films are currently being developed. Click here to learn more about SDH Syndromes.
- MEN2A Patient Experience Films
Our films have 3 purposes: 1) inform patients and carers; 2) raise awareness with health professionals of the needs of patients; 3) raise awareness of genetic endocrine syndromes generally. Production of the films will begin in April through to June (filming, May) and we are looking for volunteer film stars! Learn more about MEN2A here.
- MEN1 Patient Experience Films
Our films have 3 purposes: 1) inform patients and carers; 2) raise awareness with health professionals of the needs of patients; 3) raise awareness of genetic endocrine syndromes generally. Production of the films will take place in Autumn 2020 and we are looking for volunteer film stars! Learn more about MEN1 here.
- Young Adults' Resources
Expansion of our resources for young adults (also known as Project Rollercoaster). Please click here to read more
- GenNET Passport App
We are gathering a crack team to develop a smartphone app to replace and expand the utility of our MEN Passport. Keep an eye on our news channels for more information during 2020.