First let me thank all of you for sharing your struggles, triumphs and information. My Fiancé was diagnosed with CLIPPERS last night after a 6 year battle with illnesses. He has a neurologist and he has a wonderful GP. Any suggestions for us? I am finding it difficult to find information on this rare disease.
Thanks for contributing to the forum. I started writing this blog in 2011 because there was no information out there for CLIPPERS patients or their friends and relatives. What started as just an account of my illness is now a wider information resource. I still don't know of any other significant sources of information on the web.
Some people who read this blog and forum have been treated at the Mayo Clinic (USA) which is probably where the most expertise is concentrated. If you do find anything else out there, please let me know and I'll add it to the FAQ and reference pages here.