The links here are based off of the questions I get asked the most…at least the ones that have link-able answers.
- American College of Gastroenterology – general information on signs, symptoms, testing, treatment etc.
- International Foundation for Functional Gastrointestinal Disorders – general information as well as more specific patient resources and management tips
- Living (Well!) With Gastroparesis – Crystal Saltrelli wrote the book on living with gastroparesis, literally. She also has a ton of free resources, videos and blog posts.
- G-PACT – non-profit organization created by patients for patients with GI motility disorders
- Gastroparesis and Intestinal Failure Trust UK
- Vanderbilt Autonomic Dysfunction Center – one of the leading centers in research and treatment for autonomic disorders
- Dysautonomia International – volunteer run non-profit with information, support, resources and ways to get involved
- Dysautonomia Information Network – similar to the above
- A very basic crashcourse in dysautonomia from my blog
- Ehlers-Danlos Society – formerly the EDNF, one stop shop for information, support, events and ways to get involved
- EDS Canada
- Ehlers-Danlos Support UK
- National Organization for Rare Diseases – US rare disease organization
- Canadian Organization for Rare Disorders
Enteral and Parenteral Nutrition
- Oley Foundation – education, advocacy and networking for both tube feeding and TPN
- Feeding Tube Awareness Foundation – started and run by parents to support and raise positive awareness of children with feeding tubes, but lots of great resources for adult patients too
- Feeding Tube Awareness Week – launched by FTAF, usually taking place in early February
- I’ve also written a few blog posts about life with a feeding tube/ TPN
Crochet – This might seem strange to you, but I’ve actually received a number of emails and messages from people interested in learning to crochet and wondering where to start