Act now in SURVEYS and RESEARCH, your experiences are of value!
Sarcoidosis Association is a voluntary organisation that was created by individuals who suffer the disease at different levels, who are fully aware of the lack of support and awareness within the public and medical profession restricting sufferers ability to obtain the appropriate care and support they need to cope with Sarcoidosis.
It has been set up to provide much needed support for the sufferers, carers and their family and friends, to help them cope with the day to day emotional pressures that they face within society and coping with the disease itself.
At Sarcoidosis Association we don’t believe in baffling you with science or throwing technical terms, and will endeavour to make information available to you on this site as simple and easy to understand as possible.
The information we provide is to help you understand your illness and for others around you to support you the best way they can. We are fully aware of the lack of information that is received on diagnosis which makes life extremely complicated and frustrating adding to the depression that we all feel.
We aim to eliminate information that has proven to be out of date, misinterpreted, ill-conceived and irrelevant to what an actual sufferer feels. Our ongoing battle to fight the classic wrong comments we all hear of ‘ but its curable’ ‘it goes away’ ‘ you don’t look ill’
We provide regular meet ups at various locations throughout the UK giving peace of mind to those that join. We are also networking with other organisations to ensure that there is a wide range of support available to sarcoidosis Sufferers so that they are not left alone and in the dark.
The Sarcoidosis Association will be working with Primary Care Trusts (PCTs) around the UK. PCTs coordinate health services in your locality (GPs, hospitals, etc.).
Our aim is for PCTs to:
Benefit Sector Awareness
We are currently working with members of Parliament and PCTs around the UK to improve awareness of Sarcoidosis to benefit decision makers and front-line staff at Jobcentre, Income Support, Disability Living Allowance, Employment Support Allowance, Attendance Allowance and Carers Allowance so that they have awareness when processing claims for patients with Sarcoidosis.
Through fundraising events, media publicity and working with other organisations we aim to ensure the population of the UK is aware of the specific problems a sufferer is faced with on a daily basis.
Copyright © 2013 Martine Caitlan of the Sarcoidosis Association. Registration Number 330053. All rights reserved.