Digestion and Nutrition Disorders

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  • Association for Glycogen Storage Disease UK  - Explains the different types of glycogen storage disease and provides information and support for patients and their families.
  • Barrett's Oesophagus Campaign  - Maintains a register of Barrett's Oesophagus sufferers and provides help and support to families involved. Includes FAQ and information for health professionals.
  • The British Hernia Centre  - Provides information resources about the different types of hernia, how they happen, and treatment options.
  • CICRA (Crohn's in Childhood ResearchAssociation)  - Dedicated to creating a wider understanding of inflammatory bowel disease (IBD), particularly as it affects children and young adults. Includes information resources, details of their research grants, and contacts.
  • Core  - Charity which focuses on digestive and liver diseases. Includes news and downloadable patient information leaflets on a wide range of conditions.
  • Crohns.org.uk  - Resource for the management and treatment of Crohn’s Disease and other Inflammatory Bowel Diseases designed to help both patients and healthcare professionals.
  • Galactosaemia Support Group  - Offers information on this rare, inherited, metabolic disease which is caused by the deficiency of the enzyme galactose-1-phosphate uridyl transferase. Includes event details, galactosaemia register and dietary advice.
  • The Gut Trust  - Charity and support network for people suffering from irritable bowel syndrome. Features a quarterly journal, advice for patients and information for young sufferers too.
  • The IBS Network  - Supports people living with Irritable Bowel Syndrome; provides information about the condition and managing it, details of local groups, advice resources, and their helpline.
  • IBS Tales  - Sharing personal stories of irritable bowel system in the UK.
  • Living with Reflux  - Set up by sufferers to support families with Gastro-Oesophageal Reflux (GOR), Gastro-Oesophageal Reflux Disease (GORD), and associated conditions; includes information resources for patients and professionals, and contacts.
  • Making It Better - The Daniel Courtney Trust  - Charity set up in memory of Daniel, who suffered from microvillous atrophy, a rare bowel disorder. Contains information on the condition, details of current and past fundraising events and photographs of Daniel.
  • The National Association for Colitis and Crohn’s Disease (NACC)  - Provides support and information for people who have Ulcerative Colitis or Crohn’s Disease and their families; includes online resources, details of local groups, research programme, news, and contacts.
  • The National Information Centre for Metabolic Diseases  - Organisation to provide information and support on all metabolic diseases to children, adults, families, carers and professionals. Contains events diary, forum, newsletter and resources.
  • National Reyes Syndrome Foundation UK  - Supports research into the treatment care and prevention of Reye's syndrome and similar illnesses; also provides information and support for parents whose children have suffered from these diseases.
  • Oesophageal Patients Association  - Association for patients who have experienced oesophageal or gastric difficulties. Details the support available, including a helpline.
  • Pancreatitis Supporters' Network  - Provides medical information and support for sufferers of the condition, with advice for sufferers and carers, a discussion board and a pen pals network.
  • PINNT - Patients on Intravenous and Nasogastric Nutrition Therapy  - Provides information, advice, and support for adult patients, and for the parents and carers of paediatric patients being fed by tube. With contacts, FAQ, local groups, newsletter, and forum.
  • PUMPA – Purine Metabolic Patients’ Association  - Provides information and support, and encourages research into purine and pyrimidine disorders. Includes resources about living with these disorders and associated conditions, for patients, parents and professionals.
  • Society for Mucopolysaccharide Diseases (MPS)  - A support group for children and adults suffering from these and related conditions, their families and carers, and professionals; includes information about MPS and Fabry Disease, details of membership and activities, and contacts.
 
 
 
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