There is currently a great deal of patient representation activity in the area of neuroendocrine tumour syndromes and endocrine tumours for AMEND. AMEND is participating in developing a UK Consensus Statement on the use of tyrosine kinase inhibitors (TKIs) in refractory differentiated and medullary thyroid cancers. In addition, AMEND participated in the preliminary meeting of patient groups, clinicians and researchers looking to develop a national strategy for research into rare paediatric endocrine conditions. The latter is in line with the work of the European Reference Networks (ENDO-ERN and EURACAN) in which AMEND is also heavily involved. For ENDO ERN, work is already underway to undertake the ERN’s accepted research project looking at genetic testing issues in multiple endocrine neoplasia (MEN) type 1, and in association with the European MEN Alliance (EMENA), AMEND will be helping to develop a Europe-wide survey on Quality of Health in patients with MEN, to be distributed in early 2019. The last piece of work from EMENA, a Europe-wide survey on Quality of Care in MEN has already resulted in two poster presentations due to take place at the upcoming British Endocrine Society (BES) meeting.
- Unicorn Foundation Leads NETs Awareness Efforts in Australia
- INCA Poster “Unmet needs in the global NETs patient community from the perspectives of patients, patient advocates and NET health professionals”at NANETS
- INCA Presents its Unmet Needs Initiative in 7 Languages and Across Key Medical Conferences
- NET Patients and Supporters Will Raise Awareness at Medical School Across the UK
- AMEND Makes Sure the Patient Voice Is Heard