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Volunteer policy

Please note: our volunteer policy is currently in review and is due for updating.

1. Introduction

  • The Tuberous Sclerosis Association (TSA) welcomes and encourages the involvement of volunteers at all levels and within all appropriate projects, programmes and
  • The purpose of the TSA’S volunteer policy is to provide a clear statement and framework for the management of all volunteers, and to ensure that they have the recognition and support that they deserve. The procedures and guidance linked to this policy follow best practice and provide overall guidance and direction to employees and

2. Policy

  • Definition of a Volunteer: A volunteer is anyone who, without compensation or expectation of compensation beyond reimbursement of expenses incurred in the course of his or her volunteer duties, performs a role at the direction of and on behalf of the TSA. Volunteers shall not be considered as employees of the TSA. Volunteers enhance the work of the TSA and will not be recruited to replace paid
  • The value of volunteers: The TSA is committed to involving a diverse range of people in both and informal volunteering roles because:
    • Volunteers from the TSC community bring to the TSA the value of understanding the needs of people affected by TSC,
    • The development and support of local volunteer networks can promote the wellbeing of people affected by TSC,
    • The TSA works more effectively by benefiting from the skills, knowledge and experience that volunteers bring to the
    • By harnessing the talents and commitment of volunteers, the TSA is able to increase its impact and

2.3 The volunteering agreement

  • The policy does not constitute, either implicitly or explicitly, a binding contractual or personal agreement. The TSA reserves the exclusive right to change any aspect of the policy at any time and to expect adherence to the changed
  • The TSA welcomes the involvement of volunteers with the understanding that such involvement is at the sole discretion of the TSA. Volunteers agree that the TSA may at any time, for whatever reason, decide to terminate the individual volunteering relationship, for example failure to apply for a Disclosure check or failure to comply with TSA
  • A volunteer may at any time, for whatever reason, decide to stop volunteering. Notice of such a decision should be communicated as soon as possible to the relevant

2.4 Rights and Responsibilities

  • The TSA aims to ensure that volunteers enjoy and derive satisfaction from their involvement. Accordingly, the TSA will:
    • Always treat volunteers with respect and courtesy
    • Promote equality of opportunity and inclusiveness
    • Be clear about why we need a volunteer, providing role or task descriptions
    • Provide the staff with an induction to the TSA
    • Provide volunteers   with    guidance,   training   and    support according to their role
    • Reimburse reasonable   out   of   pocket   expenses   whilst   a volunteer is engaged in approved work for
    • Commit to resolving any problems or complaints
    • Give cover under its insurance policies whilst a volunteer is engaged in approved work for
  • In turn, volunteers shall agree:
    • Perform their duties to the best of their abilities,
    • Abide by the TSA’s policies,
    • Remain loyal to the TSA’s values
    • Work collaboratively with    staff    of    the    TSA    abiding   by agreements to undertaken or deliver specific tasks or duties
    • Never to give statements to anyone from the media on behalf of the TSA
    • Maintain strict confidentiality of the TSA
    • Produce receipts for out of pocket expenses
    • Agree to any screening such a CRB checks that the association may request
    • Declare any potential conflicts of interest in accordance with the TSA policy on

2.4.2 Volunteering

  • Everyone who volunteers or works for the TSA carries legal duties and responsibilities under Health and Safety legislation and is personally responsible for their own acts and omissions. The TSA will support volunteers to ensure the appropriate measures are in place.


Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow