Volunteer Trustee - Secretary for rare disease support group | HSP Support Group

We seek a trustee to sit for a 3 year term because our current Secretary will stand down at our summer 2024 AGM. We would be delighted to hear from people keen to help us manage and run our community, helping us grow and develop

What difference will you make?

In HSP nerves in the spine degrade, resulting in mobility problems and other symptoms which can start at any age and progress at different speeds. Many need a wheelchair. There are more than 90 types of HSP. People can feel isolated, not being able to find information or support. Our group aims to provide support and information.

What are we looking for?

You may be just the person, if one or more of these sound like you Experience and skills aligning with the above role duties Have an interest in HSP Kind, honest, diplomatic, considerate and engaging Enjoy developing ideas and concepts to help the group Take ownership of responsibilities and fulfil them Have special knowledge or experience of use to the group

What will you be doing?

Trustees help committees, make decisions on activities and finances, and take on tasks to move things forward. Trustees meet 5 times a year on-line for a few hours in the evenings. As secretary you would manage the groups registration with Charity Commission and our membership of umbrella organisations, prepare the group’s annual report, take minutes at trustee meetings, receive and manage both member and research grant applications, and manage member notifications. Write minutes for 5 Trustee meetings p/a Provide input to Trustee meetings as Secretary Manage Member Grant applications (~10-15 p/a) Formal communications about Research Grants (up to 2-3 p/a) Maintain Charity Commission registration (2-3 updates p/a) Respond to enquiries from website (~100 p/a - either directly or pass to appropriate person)