Linked Organisations

 

ACOFIFA - Asociación Coruñesa de Fibromialgia y síndrome de fatiga crónica

The Corunna Association of Patients with Fibromyalgia and Chronic Fatigue is a non-profit association which main goal is to raise awareness of Fibromyalgia and Chronic Fatigue, help patients live with their condition, and promote research on these diseases as well as the sutyd of their social and work-related consequences

 

AEPA-ATM - Asociación Española de Pacientes con Dolor Neuropático, Neuralgia del Trigémino y Disfunción de ATM

The Spanish Association of Patients with Neuropathic Pain, Trigeminal Neuralgia and Temporomandibular Pathology (AEPA ATM), is a non-profit association for patients that suffer any kind of Craniomandibular disorder, Temporomandibular Joint Disorder (TMD), Neuropathic pain, or Trigeminal Neuralgia (TN).

 

Asociación de Pacientes con Quistes de Tarlov

The Tarlov Cysts Patients Association is a national Spanish charity with the purpose of providing support and information to patients suffering from Tarlov Cysts and their relatives. They promote various initiatives to raise awareness on this disease.

 

AVAFI - Asociación Valenciana De Afectados de Fibromialgia

AVAFI is the Valencian association of people affected by Fibromyalgia Syndrome. It is a non-profit organisation established in October 1996.


AVAFI arose from the need to bring together people suffering from a disease that affects all levels of life: physical, emotional, work, family and social. Its main goal is to guide, support and inform patients and their relatives about the disease and to offer advice on legal, social, psychological and medical aspects.

 

British Pain Society

The British Pain Society is the oldest and largest multidisciplinary professional organisation in the field of pain within the UK. Our alliance of professionals works collaboratively with patients and industry partners to advance the understanding and management of pain. We strive to reduce the suffering of people enduring daily pain. Today the British Pain Society has a membership of over 1,200 and is a uniquely relevant representative body on all matters relating to pain.


The British Pain Society aims to promote education, training, research and development in all fields of pain. It endeavours to increase both professional and public awareness of the prevalence of pain and the facilities that are available for its management. The Society is involved in all aspects of pain and its management through the work of the Council, various Committees, Special Interest Groups and Working Parties and via its publications, Annual Scientific Meeting and educational seminars.

 

DRWF - Diabetes Research & Wellness Foundation

The Diabetes Research & Wellness Foundation (DRWF) aim is to raise awareness to all forms of diabetes so that people may take preventative actions where possible to avoid or delay the onset of type 2 diabetes and to access the support and guidance necessary to manage all forms of diabetes effectively. The charity provides the information and tools to establish and maintain a pro-active approach to self-care in order to enhance quality of life and reduce the risk of the serious complications associated with the condition. We also fund diabetes research in the UK and around the world in order to better understand the causes, prevention, treatment and management, but our ultimate goal is to find a cure.

 

Federación ASEM - Federación Española de Enfermedades Neuromusculares

The Neuromuscular Diseases Spanish Federation is a group of associations of people affected by neuromuscular diseases that promotes all kinds of actions and activities - dissemination, research, and information - designed to improve the quality of life, integration and personal development of people affected.

 

FMA UK - Fibromyalgia Action UK

FMA UK operates as a signpost to information and resource for people who are affected by fibromyalgia. Fibromyalgia Action UK is a registered charity run primarily by unpaid volunteers. FMA UK was established in order to provide information and support to sufferers and their families. In addition, the Association provides medical information for professionals and operates a national helpline. We aim to encourage NHS and other funding sources for new research projects. At present there is very little research being carried out in the UK and sufferers are told there is no cure. We hope that will be a statement of the past.

 

InDependent Diabetes Trust

The InDependent Diabetes Trust (IDDT) is a registered charity for people with diabetes and their families. The aims are to provide support and information in non-medical language to help people to understand more about Type 1 and Type 2 diabetes and how best to manage it. IDDT is funded entirely by voluntary donations and does not accept pharmaceutical industry funding in order to provide information that is not influenced by funding sources.

 

Pain Association Scotland (United Kingdom)

Pain Association Scotland is a national charity that delivers professionally-led pain management and aims to improve the quality of life for chronic pain sufferers by supporting and empowering them to live independently in the community. Its main focus is to help the significant numbers of people burdened with chronic pain. By introducing them to and quickly enabling them to apply self-management strategies and coping skills/techniques, it makes a dramatic difference to their daily living.


Chronic pain has a high impact upon physical, psychological and family health. Significant issues include: depression, long-term stress, isolation, high levels of medication, poor mobility, lack of self-esteem and fatigue. Over 4 million GP appointments are made every year in the United Kingdom by people seeking help and relief from chronic pain and in many cases, they leave without answers and without effective pain relief.

Pain Association Scotland provides a unique two-strand community-based self-management service. The first strand offers a rolling programme of training, education, skills maintenance and support through a network of 30 staff led self-management groups. The second strand offers an intensive 24-hour self-management course delivered in collaboration with NHS chronic pain services for their patients and additionally for users of our service who have not come through the clinical route. We know that the need for these programmes is highest in the areas of social deprivation and in remote rural communities.

This combination of courses and groups provides a unique model that combines intensive skill building followed by high quality ‘open door’ maintenance groups. Users of our service say this is ideal for them because it recognises the substantial on-going needs that people have when courses have long finished. We deliver a high quality service that responds to the reality that long-term conditions need to be managed, long term. In addition to training input, we also recognise that isolation is a major problem and the normalisation, peer support and companionship that a regular well-run group provides, are not so much skills learnt, but rather key components of well-being and form a vital part of our service.

 
Logo of Pain Concern

Pain Concern (United Kingdom)

Pain Concern is a charity working to support and inform people with pain and those who care for them, whether family, friends or healthcare professionals.


Pain Concern focuses on:

  • Producing information on pain using a variety of media platforms;
  • Providing support to people with pain and those who care for them;
  • Raising awareness about pain and campaigning to improve the provision of pain management services.