CSF Leak Association

CSF Leak Association

At a glance

Causes

  • Health and well being / research and care

Other details

Organisation type: 
Charity
Geographical remit: 
National - Britain

Objectives

The CSF Leak Association's aims and objectives, as set out our constitution, are:

  1. To raise the profile and promote awareness of Cerebrospinal Fluid Leaks (with a particular focus on spinal Cerebrospinal Fluid Leaks), hereafter within these purposes referred to as ‘CSF Leaks’, in all areas of society, including the general public, the media and the medical profession, for the public benefit;
  2. To improve, for the public benefit,  the general availability of and access to information and resources relating to the causes, symptoms, diagnosis and treatment of CSF Leaks;
  3. To advance, for the public benefit, understanding of the causes, symptoms, diagnosis and treatment of CSF Leaks through research, education, fora, publications, practical advice, and other appropriate means and services;
  4. To campaign for, encourage and support positive change and advancements within government, the four national health services within the UK, other relevant health care providers (including those outwith the UK), other relevant organisations and general society that address the various issues faced by people suffering or suspected to be suffering from CSF Leaks, their families and supporters;
  5. To work to support and improve the availability of and access to investigatory tests and treatments required by people suffering or suspected to be suffering from CSF Leaks;
  6. To encourage and support the establishment, development and furtherance of organisations and initiatives the aim(s) of which are to a) undertake and/or facilitate research into CSF Leaks (incl. their underlying causes and resultant effects) and/or b) support people suffering or suspected to be suffering from CSF Leaks, their families and supporters;

Activities

Our main objective this year focused on the establishment of our Medical Advisory Committee (MAC), whilst still also progressing with a range of measures to raise awareness of and improve access to information about CSF Leaks.

Some of the strategies we used to meet these objectives:

  • Arranging the inaugural MAC meeting (with meetings to be held bi-annually thereafter);
  • Organising and overseeing our inaugural Leak Week UK awareness week in early Spring 2018;
  • Preparing and adopting our business plan, which will guide our work for the years ahead;
  • Continuing our work as a stakeholder with NICE, contributing to consultations on new guidelines relevant to CSF leaks;
  • Actively increasing our membership and updating our membership/renewal packs with new information and resources;
  • Attending a number of medical conferences and events within the UK to promote the charity and CSF leaks
  • Publishing new factsheets and redesigning existing publications;
  • Reviewing and updating our online, searchable database of UK/EU doctors with experience of CSF leaks;
  • Commencing outreach work with other bodies and foundation work on the establishment of regional CSF leak support groups;
  • Preparing and adopting of a range of governance/management policies and protocols;
  • Support for a number of awareness and fundraising events;

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