On Friday, 13th July AMEND will hold its first annual training day for 7 new regional volunteers who were recruited within 48 hours of the call going out earlier this year. Their roles will include developing regional groups around the UK for peer support of all those affected by multiple endocrine neoplasia, succinate dehydrogenase disorders and adrenocortical cancer. This type of support has long been called for since only a minority of members can attend AMEND’s Annual Patient Information Day each May. In fact, the project was funded by members of AMEND themselves back in December 2017. AMEND is thrilled to be in a position now to recruit, train and support these important volunteers as they go about their outreach work. In the future, AMEND hopes that these volunteers will be able to provide support directly at hospital level. In the meantime, AMEND’s members will benefit greatly from meeting others in their region who are on similar journeys with their conditions.
- 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