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Job description


We are looking for volunteers, preferably with experience of community engagement and networking, to:

· Research and develop a database of local authority websites

· Research and develop a database of other charities and support organisations, who may support individuals affected by leukodystrophy

· Request for Alex TLC to be added as a support organisation to the above resource lists

· Improve awareness of the charity and leukodystrophy within local authorities, other charities, and support organisations

· Research ways that we can improve our outreach to yet-to-reach groups within the community

This is a wonderful opportunity to develop your existing skills within a unique arena, learn about the difficulties facing those with rare disease, and give vital and tangible support to sufferers of leukodystrophy.

We need help to give hope and support to people affected by leukodystrophy – could you be that help?


Candidates should be able to demonstrate the following:

· an interest in Alex TLC and the work that we do

· basic understanding of the complexities of leukodystrophy

· excellent written skills

· excellent communication skills

· excellent computer skills, particularly Microsoft Word and Excel

· excellent organisational and administrative skills

Alex TLC are flexible and the role can be home based or at our Peckham, London SE15 office.

More about Alex TLC

Alex, The Leukodystrophy Charity (Alex TLC) is a trusted and experienced organisation offering support and information for all t...

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Posted on: 23 October 2023
Closed date: 21 January 2024 at 23:59
Tags: Communications, PR

The client requests no contact from agencies or media sales.