As Advocacy for Patients finds new resources, we will share them with you by posting links here.
Crohn's Adventure Foundation - Through amazing experiences like hiking, climbing, biking and other adventures, the CAF raises awareness of the disease. The Foundation will help further research that lead to advancements in treatments and a cure.
Cure the Process is a campaign to make it easier and faster for researchers who work on treatments for the rarest of diseases to achieve regulatory (i.e., FDA) approvals.
Dr. Frank Sileo - Dr. Sileo -- a patient with Crohn's disease -- specializes in treating patients with chronic illness. He also is the author of two wonderful books for chronically ill children.
govbenefits.gov - An excellent source of
government benefits in addition to Social Security.
Neighborhood Legal Services, Inc. - lots of information and links
to resources
www.diagknowsis.org - A website teaching patients how to ensure their diagnosis is accurate before undergoing life-altering treatment.
www.crohnsandme.com - Pharmaceutical manufacturer UCB's website for patients, providing information about Crohn's disease.
www.livingwithuc.com - Pharmaceutical manufacturer Centocor's website for patients, providing information about ulcerative colitis.
www.ideaskids.com - This website is designed to provide support, education and resources for children, teenagers and parents who are affected by intestinal disease. IDEAS believes in supporting the abilities of people with intestinal disease, and educating patients, their families and their communities through public events and resources like this website.
www.nolo.com - excellent resource where non-lawyers can find do-it-yourself legal texts as well as attorneys in your area.
European Digestive Motility Centre - The EDMC is a non-profit virtual centre focused on guidance and consensual management of patients with severe gut motility disorders (i.e. chronic, sometimes severe pathologies such as achalasia, gastroparesis or chronic intestinal pseudo-obstruction).
The Association of Gastrointestinal Motility Disorders - The Association of Gastrointestinal Motility Disorders, Inc. (AGMD), is one of the oldest non-profit organizations in existence with a focus on digestive motility diseases and disorders. It is an organization which focuses on education, the dissemination of information, advocacy, outreach, research, and support.
Bursitis.org - Your Source for Bursitis information and Treatment Options. At Bursitis.org it is our goal to give readers an accurate source to research information that we believe will help educate them on Bursitis and treatment options.
Chronic Babe - This online community is for babes (who just happen to be chronic). Thanks to Jenni Prokopy for this wonderful website.
IG Living - a publication for those with immune disorders
PSC Partners Seeking a Cure - a support organization for patients with primary sclerosing cholangitis.
Hemophilia Federation of America
Attorney Martin Shenkman has graciously provided a TON of information on estates, wills, living wills, finance, marriage and divorce, and on and on all for FREE.
Medtronic's Get the Facts: valuable information about gastroparesis for patients
Womens Resource Network- resources for women in Rhode Island, Southeaster Mass and Connecticut
Advocacy for Patients has not had direct experience with all of these, but we urge you to explore them -- and please share your feedback so we can evaluate the various organizations.