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Guest Jude the Grouch

Rare Disorders Facing Mistrust And Lack Of Understanding

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Rare Disorders Facing Mistrust And Lack Of Understanding. People who have been diagnosed with rare disorders often encounter mistrust and a lack of sympathy in their meetings with the support system. Since they themselves know a good deal about the treatment, measures to be taken, risks and consequences of their diagnoses, they expect to be listened to and respected. But when they meet health service personnel, they find it difficult to get through to them. Lisbet Grut. Medical News Today. 06 Mar 2009.

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Good one, Judy!


How true many of us have found to be so!


That's why, when we find a doctor who isn't familiar with our illnesses, we can make a decision. Either give them one more opportunity, or line up another doctor in their place!

Special Hugs,


Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I think this is one of the best articles I've read in a long time. It gives a voice to an experience which I think is way too common for many of us.

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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