Our Myt1L Network aims to: •Work with #raredisease National + International networks, including: The MYT1L Project , The Original 2p25 / MYT1L Family Community•Raise awareness •Support + share current + past research •Provide Information, Resources + Signposting: support for Carers, legacy planning etc., self-management/care, social/life skills etc.  •Reduce isolation + health inequalities. •Membership: Myt1Lers, their families + Carers •Clinicians, educators, + researchers who support our goals. [With Thanks to Valerie + Liz.]