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Support Groups
Personal/individualized information and support can be obtained by subscribing to the Amyloid e-mail list. There are over 500 subscribers world wide. It is a place where you can get advice, comfort and meet others in your area. The list is operated by ACOR (the Association of Cancer Online Resources, Inc). To sign up/enroll, click here.
You can also check The National Organization for Rare Disorders (NORD) where other support groups are listed.
Listed below are regional support group meeting notices. Since there are so few Amyloidosis patients, it is often difficult to get enough patients and caregivers together to make a group work. If you are interested in helping to start up a group, please contact ASG (Amyloidosis Support Groups) muriel@finkelsupply.com or go to the website at www.amyloidosissupport.com to get help in how to set up or attend a patient support group meeting.
Arizona & Southwest ATLANTA GEORGIA AUSTRALIA AUSTRALIA - Melbourne, Victoria Baltimore and Chesapeake Bay Area Boston/New England California, Northern California, Southern Canadian ASN - Ontario Carolina's, North & South Chicago-Indianapolis Florida Florida, Central ISRAEL - Tel Aviv Las Vegas Maryland - Hagerstown Michigan-Ohio Minneapolis and Upper Midwest New York - Upstate New York City Pacific Northwest Philadelphia Region Rocky Mountain Texas Area
Amyloidosis patients have many common symptoms and
treatments. It is estimated that 15% of
patients with Multiple Myeloma have amyloidosis and most of the testing is the
same for both diseases. If you cannot
locate a support group in your area, then you can try the International Myeloma
Foundation, Inc. at www.myeloma.org.
Their network of groups is extensive.
Telephone Support
Contact Mr. Jim Lang of Amyloidosis Network Inc.:
888-AMYLOID (888-269-5643) or
(713) 466-4351
Jim has been providing a vital support link to many of us for the past several years.
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