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Chronic Illness
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Chronic Babe - This online community is for babes (who just happen to be chronic). Thanks to Jenni Prokopy for this wonderful website. |
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www.butyoudontlooksick.com - This website is about living life to the fullest with Lupus or any invisible disease. Designed to put a personal "real-life" face on the disease instead of a stuffy medical journal entry, the site author has put together an easy to read collection of stories, articles, book reviews, product reviews, resources, a message board and answers to the endless questions of: "But you don't look sick?" |
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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. |
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www.diagknowsis.org - A website teaching patients how to ensure their diagnosis is accurate before undergoing life-altering treatment. |
Law and Benefits
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govbenefits.gov - An excellent source of government benefits in addition to Social Security. |
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Neighborhood Legal Services, Inc. - lots of information and links to resources |
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www.nolo.com - excellent resource where non-lawyers can find do-it-yourself legal texts as well as attorneys in your area. |
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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. |
Digestive Disease
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United Ostomy Associations of America - A volunteer-based health organization dedicated to providing education, information, support and advocacy for people who have had or will have intestinal or urinary diversions. |
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IBDSucks - an online support network for patients with Crohn's disease and ulcerative colitis. |
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CCFA Crohn's & Colitis Foundation of America - The Crohn's & Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. |
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YODAA - Young Ostomate & Diversion Alliance of America. Visit the website or contact via yodaa@uoaa.org |
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IBD Quilt Project, Inc. - Created to raise public awareness of Ulcerative Colitis and Crohn's Disease through the display of the IBD Quilt panels and to provide IBD patients, their families and/or friends a creative outlet to express their thoughts and experiences of living with a chronic disease. Read the IQP Newsletter here. |
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www.digestivedistress.com - An advocacy organization for patients with gastroparesis and other motility disorders. |
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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. |
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Medtronic's Get the Facts: valuable information about gastroparesis for patients |
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www.crohnsandme.com - Pharmaceutical manufacturer UCB's website for patients, providing information about Crohn's disease. |
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www.livingwithuc.com - Pharmaceutical manufacturer Centocor's website for patients, providing information about ulcerative colitis. |
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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. |
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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). |
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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. |
Other Specific Disease Sites
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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. |
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IG Living - a publication for those with immune disorders |
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PSC Partners Seeking a Cure - a support organization for patients with primary sclerosing cholangitis. |
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Hemophilia Federation of America |
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Pain Relief Network |
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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. |
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.
Special Thanks To:
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Pearl Jam - The band has been one of Advocacy for Patients' biggest supporters. Thanks to Mike McCready for his support and encouragement. |
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Infinite PR - Our pro bono public relations firm. The best in the business. |
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Site design & maintenance - Spire Designs |
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