Rare Disease UK is encouraging sufferers of rare, genetic or undiagnosed diseases to raise awareness of their conditions" by writing to their MP to ask will they join their new All Party Parliamentary group. They provide templates of letters etc. to make it easier for people to do. Here is a link to them. http://www.raredisease.org.uk/appg.htm We all know that the more people that know about these illnesses the better chance we have of more research being done to help us even if it's only ways to relieve our symptoms.
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