Your Illness

Chronic pain is a disease of the central nervous system.  It is defined as “pain without apparent biological value that has persisted beyond normal tissue healing time”  It is also defined as pain that either persists beyond the point that healing would be expected to be complete (usually taken as 3-6 months) or that occurs in disease processes in which healing does not take place.

Republic of Ireland

Chronic Pain Ireland
Chronic Pain Ireland (CPI) is the national charity providing information, education and support services to people living with Chronic Pain, their families and friends. They advocate on their behalf and work closely with stakeholders.
Website: http://www.chronicpain.ie/

Cystic fibrosis (CF) is an inherited chronic disease that primarily affects the lungs and digestive system of about 1200 children and adults in the Ireland. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus. This can clog the lungs leading to serious lung infections; and can obstruct the pancreas from breaking down and absorbing food. 

Republic of Ireland 

Cystic Fibrosis Ireland
CF Ireland (CFI) is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for people with Cystic Fibrosis in Ireland. CF Ireland also co-operates with medical professionals to give maximum assistance to both parents and children/adults with Cystic Fibrosis.CF Ireland (CFI) is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for people with Cystic Fibrosis in Ireland. CF Ireland also co-operates with medical professionals to give maximum assistance to both parents and children/adults with Cystic Fibrosis.
Website: www.cfireland.ie

Cystic Fibrosis Registry of Ireland
The Cystic Fibrosis Registry of Ireland project was established in 2001 to keep the relevant medical records of each patient with cystic fibrosis in a central database. The patient records are entered onto the computer system (database) by Clinical Research Associates from the CFRI.
Website: www.cfri.ie

Northern Ireland 

The Cystic Fibrosis Trust  – Northern Ireland and the Isle Man
Cystic Fibrosis Trust are the only UK-wide charity making a daily difference to the lives of people with cystic fibrosis, and those who care for them. They are working to improve standards of care, from driving up quality to working with clinicians. They also offer practical support through their team of Public Affairs Officers, their helpline, and a range of welfare grants.
Website: http://www.cysticfibrosis.org.uk/

Feature: Forum

HIV (Human Immunodeficiency Virus) is a virus that attacks and weakens the body’s immune system. HIV makes it difficult for your body to fight against infections and cancers that it would normally be able to fight off. If HIV is not treated, the virus may progress to AIDS (Acquired Immunodeficiency Syndrome). AIDS is a disease in which the immune system breaks down and the body is unable to fight off certain infections.

All Ireland

Positive Now
Positive Now is a diverse group of people living with HIV working to build and enable an all-Ireland network and ensure that the voices of HIV positive people are represented at all levels, whilst constantly challenging stigma and discrimination.
Website: http://positivenow.ie/

Republic of Ireland

ACET (AIDS Care Education & Training)
ACET Ireland is improving the lives of those living with, and affected by, HIV in lreland by playing their part in reducing the number of new cases of HIV in Ireland. They work to break down barriers of fear in Irish Society to deliver projects that seek to change individuals, families and communities for the better. 
Website: http://acet.ie/

Northern Ireland

Positive Life NI
Positive Life supports and promotes positive living for people with and affected by HIV in Northern Ireland and the border counties. Positive Life has been making a difference to the quality of people’s lives for over 25 years, beginning life as the AIDS Telephone Helpline in 1986 and now as a city centre facility offering a range of services and supports expanded across Northern Ireland.
Website: http://www.positivelifeni.com/ 

Muscular dystrophy (MD) is a group of muscle diseases that weaken the musculoskeletal system. Muscular dystrophies are characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. It can affect both adults and children. There is no cure for muscular dystrophy but there have been huge advances in increasing the quality of life for people with the condition.

Republic of Ireland

Muscular Dystrophy Ireland 
Muscular Dystrophy Ireland aims to provide information and support to people with neuromuscular conditions and their families through a range of support services. Their objective is to promote through practical empowerment, independent living for people with the condition muscular dystrophy.
Website: http://www.mdi.ie/

Northern Ireland

Muscular Dystrophy UK
Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. They bring together more than 60 rare and very rare progressive muscle-weakening and wasting conditions, affecting around 70,000 children and adults in the UK.
Website: http://www.musculardystrophyuk.org/

Progressive Supranuclear Palsy (PSP) is caused by the progressive death of nerve cells in the brain, leading to difficulty with balance, movement, vision, speech and swallowing.

Republic of Ireland

Progressive Supranuclear Palsy (PSP)
PSPA Ireland support people who have or are affected by Progressive Supranuclear Palsy or Corticobasal Degeneration. We seek to make a positive difference to the lives of people with these conditions. The voluntary organisation runs support groups, provides information, and advice to families and healthcare professionals by telephone or email.
Website: pspaireland.ie/

Northern Ireland

The PSP Association
The PSP Association offers support and information to people living with PSP and CBD, while supporting research into treatments and ultimately a cure for these conditions.
Website: http://www.pspassociation.org.uk/
Feature: Forum

Kidney disease can affect people in various ways, ranging from treatable disorders without long-term consequences to life-threatening conditions. Acute kidney disease develops suddenly, and may go away completely once the underlying cause has been treated. Chronic kidney disease (CKD) does not go away with treatment and tends to get worse over time. CKD eventually leads to kidney failure, described as end-stage kidney disease, or will require a kidney transplant or blood-filtering treatments called dialysis.

Republic of Ireland

Irish Kidney Association 
The Irish Kidney Association is a charitable voluntary organisation founded in 1978. They are dedicated to meeting the needs of renal patients and their families and carers, living with and affected by end stage renal disease. These needs are spread across all aspects of life – medical, social and psychological. The profile of the kidney patient ranges from infanthood to the elderly who are undergoing various methods of treatment – haemodialysis, peritoneal dialysis (both CAPD and APD) and kidney transplantation. 
Website: www.ika.ie

Northern Ireland 

Northern Ireland Kidney Patients Association
Northern Ireland Kidney Patients’ Association is a charitable voluntary organisation, dedicated to the support of Northern Ireland’s kidney patients, their families and carers. Their association, which has almost 400 members, is self-funding and run by kidney patients, their relatives and friends
Website: https://www.facebook.com/NIKidneyPatients/ 

Respiratory or lung diseases are some of the most common medical conditions in the world. The lungs are part of a complex apparatus, expanding and relaxing thousands of times each day to bring in oxygen and expel carbon dioxide. Lung disease can result from problems in any part of this system.

Republic of Ireland

Irish Thoracic Society
The Irish Thoracic Society (ITS) is the official society for the broad spectrum of healthcare professionals involved in the care of people with chronic or acute respiratory disease in Ireland. Membership of the Society is drawn from respiratory physicians, internal medicine physicians, paediatricians, thoracic surgeons, general practitioners, junior doctors, nurses, physiotherapists, pharmacists, dieticians, pulmonary function and respiratory technicians, scientists and other healthcare providers who specialise or have an interest in respiratory disease and care throughout Ireland – North and South
Website: http://www.irishthoracicsociety.com

COPD Support Ireland
COPD Support Ireland is a charity set up to support all those living with chronic obstructive pulmonary disease (COPD). They are Ireland’s only national COPD support and advocacy body, bringing together local support groups from around the country, to help those living with, and caring for someone with, COPD.
Website: http://copd.ie

Northern Ireland

British Lung Foundation (NI branch)
The British Lung Foundation (BLF) Northern Ireland offers support for people who have lung disease, their families and carers. They raise awareness of lung disease at a local and national level, campaign to make lung disease a priority, and work to improve services across Northern Ireland.
Website: www.blf.org.uk/
Feature: Helpline – Forum

Someone born with spina bifida has an opening in the spine. A healthy spine is closed to protect the spinal cord, which is a bundle of nerves that sends messages between your brain and the rest of your body. Sometimes part of the spinal cord and spine do not develop correctly during pregnancy, leaving an opening where the spinal cord may protrude outside the body.
Hydrocephalus, also known as “water on the brain”, is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Although it does occur in older adults, it is more common in infants.

Republic of Ireland

Spina Bifida Hydrocephalus Ireland
Spina Bifida Hydrocephalus Ireland is a charity that aims to  provide information, support and advice to people with Spina Bifida and/or Hydrocephalus, their parents and carers, as well as to promote social inclusion and equality for people with Spina Bifida and/or Hydrocephalus in Irish society.
Website: www.sbhi.ie

Northern Ireland

Shine
Shine is a community of 75,000 individuals, families, friends, and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues. Working together throughout England, Wales and Northern Ireland, they strive to overcome challenges and achieve the best for you and your family.
Web: www.shinecharity.org.uk/