Information, support and friendship
AMEND is run by patients, for patients, to inform and support anyone affected by Multiple Endocrine Neoplasia (MEN) type 1 or 2 or associated endocrine syndromes and tumours.
We are here to break the isolation so often felt by those with these rare diseases, and we would be delighted to welcome you into our 'family'.
The aim of our website is to direct you as quickly as possible to our support services and to information you can trust on MEN1, MEN2, MTC (medullary thyroid cancer), FMTC (familial medullary thyroid cancer), adrenal gland tumours (phaeochromocytomas), parathyroid hyperplasia, paragangliomas, FIPA (familial isolated pituitary adenoma) and SDHx (succinate dehydrogenase) disorders.
European Survey On Risks & Benefits of New Therapies
As part of a European research study, Genetic Alliance UK and researchers at the University of South Wales want to understand how patients perceive the risks and benefits of medicines. The work is important to ensure that patient views are valued in the regulation of new medicines.
If you are 18 or older, and you are a patient or a carer, you can help us by completing a short online survey. The survey includes questions about your experience with medicines, your view of the risks and benefits associated with medicines, and how you think medicines should be regulated.
The survey is available in several different languages.
Click here for further information and direct links to the survey.
Study Looking for Volunteer Families
RESEARCH: TALKING TO CHILDREN ABOUT INHERITED GENETIC CONDITIONS - Update!
The research project “Talking to Children about inherited genetic conditions” launched on 1st September 2013. The project works collaboratively with families (parents, children and young people) with an inherited genetic condition to develop an intervention that will support families to communicate more effectively with their children (<18 years) about the genetic condition affecting their family and its risks.
We received a large number of expressions of interest from families wanting to take part in the study. As a result of the discussions about families involvement we have extended the number of focus groups to include one a group where parents haven't spoken to their children can help us to develop the intervention. This focus group will be held on 23rd November 2013.
For details on this and other ways in which to get involved in research, visit our Patient Involvement in Research webpage.
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