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!
Community Advisory Groups
From 2020, AMEND began to see a large increase in enquiries for our patient communities to help advise research projects, and participate in technology assessments with NICE and the SMC. It is no longer possible for our small staff to represent our increasing number of different disease communities in this way.
This is why we have developed Community Advisory Groups where patients and carers can volunteer to represent their disease as part of a small group.
2020 Virtual Support Groups & Volunteers
Our trained Regional Volunteers will be continuing to organise and facilitate regular virtual support meetings throughout 2020. Click here to learn more
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.
Phaeo Para Support UK
A 2020 project by AMEND to develop a new identity and community for families affected by genetic syndromes of phaeochromocytomas and paragangliomas (amongst other tumours). A new booklet, website and patient experience films were developed. Click here to learn more about PPGL 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. The films are due to be released in late September 2021. 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. The films are due to be released on 10th November 2021. 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.