SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Call For Website / News Writing Assistance

The Cystinosis Foundation UK is looking for some extra assistance with writing news articles and producing content for the website. This voluntary role would involve writing and editing articles related to Cystinosis to be used on the website and in the newsletter, as well as communicating directly with the persons to which the article relates.

The work load would vary month to month – a quiet month would involve no work, a busy month around 10-20 hours. All work would be performed from your own home, communicating with the existing web team and Foundation committee by email and/or phone.

The Role

  • Seek new stories concerning what is happening within the UK Cystinosis community and abroad.
  • Communicating with those involved with the article, to extract relevant information in order to produce a finished article.
  • Authoring and editing the article.
  • (Depending on experience, contributing to general maintenance of the website.)
  • Location

  • Own home. The location is not important, as most communication would be performed via email and phone.
  • A willingness to attend occasional fundraising events or conferences in your area would be appreciated, but not expected.
  • Key Skills / Experience:

  • Proficient with, and have access to, the Internet and email.
  • Good general communication skills, and good written English.
  • Basic word processing and editorial skills.
  • Proactive in liaising with members of the public and members of the Foundation.
  • Reliable.
  • Useful Skills:

  • Experience of dealing with or knowledge of Cystinosis.
  • HMTL / Web design.
  • Graphic design (e.g. Photoshop).
  • Hours:

  • 0 – 20 hours month. Likely around 5 hours per month on average.
  • Ultimately, the Foundation requires more assistance in writing content for the website, but the role could be what you make it, in terms of your own skills, the free time you are willing to commit to the Foundation and how you wish to contribute. The Foundation is run purely on a volunteer basis, so all offers of help are generally appreciated.

    If you are interested, please contact us, with a brief background about yourself, your skills and what you feel you could offer to the role.

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