After canvassing AMEND’s membership in 2019 about potential rebranding, it became evident that AMEND’s existing SDH / PPGL Syndrome members were the only community that did not feel that the AMEND branding reflected their diseases well enough. AMEND therefore took the decision to create a new identity for this community, called SDH Support UK. SDH Support UK will be a continuous project under the AMEND umbrella, in the same vein as their group, ACC Support UK, which provides services for UK adrenocortical cancer (ACC) patients. New patient literature on the Syndromes is in production, together with a set of patient experience films. Subject to funding, a new, dedicated website for SDH Support UK will be developed where all the resources produced will be housed.
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- Children, Teens, and Young Adults with NETs Facebook Live Discussion