Mary Instone

As Membership Support Officer, my role is to help deliver the support we offer to members of SWAN UK (syndromes without a name). I am the first point of contact for new SWAN UK members and I ensure they are supported with information, further signposting and opportunities to make contact with other members. My background is editorial work in trade publishing but I subsequently became involved in the charity world and worked for a national learning disability charity before I came to Genetic Alliance UK. I am particularly interested in the impact that raising a child with an undiagnosed genetic condition has on the family as a whole, and in finding new and innovative ways to support parents and siblings.

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