SarcoidosisUK

SarcoidosisUK

At a glance

Causes

  • Health and well being / research and care

Other details

Organisation type: 
Charity
Geographical remit: 
National - Britain

Objectives

SarcoidosisUK (previously SILA) was founded in 1997 and has been helping people with sarcoidosis ever since. All members of the Board have personal experience of sarcoidosis.

SarcoidosisUK is a charity funded solely from personal donations – of both time and money. Sarcoidosis is a rare disease and suffers from poor quality information, low levels of support and almost no research into finding a cure. SarcoidosisUK works to change that.

SarcoidosisUK has four goals:

  1. Information: Providing accurate and detailed information to people with sarcoidosis, their carers, and medical professionals.
  2. Support: We provide emotional support for people with sarcoidosis and their carers by telephone, email, via social media and at our support groups across the UK.
  3. Finding a cure: SarcoidosisUK raises funds and invests them into focused medical research that works directly to finding a cure for sarcoidosis.
  4. Awareness: We recognise the lack of understanding and awareness from both the medical profession and the general public regarding sarcoidosis. We aim to change this.

Activities

1. Information: Our goal is to provide clear, quality and accurate information about sarcoidosis to anyone affected, their carers and families, and to medical professionals. This is extremely important to us and something that we take very seriously.

All of our written information is produced with the help of trusted medical experts and is free for anyone to use, in print and online.

Our range of Patient Information Leaflets provide detailed information about different types of sarcoidosis. They are indispensable guides for patients, GPs, consultants and anyone else who wants to learn more.

Finding a sarcoidosis specialist can be difficult and confusing for patients and GPs. To help, we have created the UK’s first Sarcoidosis Consultants Directory. This database contains verified and updated details of sarcoidosis experts across the country.

Many sarcoidosis patients have questions about their condition, particularly when they are newly diagnosed. Our online FAQ page covers a wide variety of topics and helps to answer some common queries.

We also provide up to date information on many other topics including nutrition, disability benefits, vaccines and travel advice.

2. Support: SarcoidosisUK know that sarcoidosis patients often do not and cannot get the support they need or deserve. SarcoidosisUK’s Support Services provide vital practical and emotional support for anyone affected by sarcoidosis. All of our support services are confidential and are provided free of charge. Our goal is to ensure that anyone affected by sarcoidosis is able to speak to someone who cares about them, understands them and has the time to listen.

The SarcoidosisUK Nurse Helpline has talked to over 3,000 people affected by sarcoidosis, making calls all year round. Calls are made by NHS nurses who have personal and professional experience of sarcoidosis. The helpline has become a crucial service for those who need some additional reassurance and support to help understand their condition.

The SarcoidosisUK Support Group network spans the UK from Plymouth to Perth. Our aim is to connect patients together so they can help support each other in a safe environment. Many patients describe meeting someone else with sarcoidosis for the first time as “a life-changing experience”.

Our Online Forums are the perfect place for patients to give and receive support online

3. Finding a cure: Sarcoidosis is a condition that does not receive sufficient attention from pharmaceutical companies or medical researchers. SarcoidosisUK may be small, but we are a leading investor in sarcoidosis research. Our goal is to continue to do this again and again, until we have found a cure.

4. Awareness: Our goal is to make the public and healthcare professionals much more aware of what sarcoidosis is and how it affects the lives of patients. We raise awareness in a number of ways:

  • distributing quality information in surgeries, hospitals and clinics across the UK.
  • representing patients on advisory panels, task forces and conferences at regional, national and international levels.
  • engaging with healthcare professionals and decision makers to improve quality of care.
  • raising the profile of sarcoidosis in the news, online and on social media.

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