Pain News Network – “A 501(c)(3) non-profit news service that provides in-depth coverage about chronic pain and pain management. Our mission is to raise awareness about chronic pain, and to connect and educate pain sufferers, caregivers, healthcare providers and the public about the pain experience.” They publish articles from guest columnists too, including one of mine – https://www.painnewsnetwork.org/stories/2017/7/19/the-case-for-opioid-therapy
AGMD (Association of Gastrointenstinal Motility Disorders) – AGMD was the first support organization I became a part of, and it helped me so much. It made me feel not alone and introduced me to some amazing people! They have monthly support group meetings in Lexington, Massachusetts, and monthly telephone/Skype support groups. There’s also a help line and mentoring program.
The Oley Foundation – according to their website, Oley is “a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking. ” According to me, it’s the best resource online for people with tubes or on TPN.
Inspire – a collection of forums for many different medical conditions. Every time I post a question I get a lot of useful responses. You can follow me at https://www.inspire.com/digestingthefacts/journal/
The Ehlers-Danlos Society – a good resource on EDS, with explanations of each type, conferences, patient support, information for medical professionals, research, and opportunities to connect with other EDSers.
DINET (Dysautonomia Information Network) – a nonprofit promoting dysautonomia awareness with great resources to learn more about dysautonomia. Some of the best information I’ve found on the subject.
Mast Attack – A website and blog on mast cell diseases, written by a scientist with systemic mastocytosis. The best resource I’ve found on Mast Cell Activation Syndrome/Disorder and other mast cell diseases.