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DiscussionLiving with Rare Disease and Chronic Pain: What's your story?
Chronic Pain | Last Active: Sep 2, 2021 | Replies (43)Comment receiving replies
Replies to "@faithwalker007 @jesfactsmon @bustrbrwn22 @lioness There is one documented case of a transplant for a patient with..."
All rare cases are “unusual” or they wouldn’t be rare! That’s why they are not normally seen and have “orphan” drugs and we’re supposed to be eligible for drugs in the final stages of testing, etc.
Not because we’re the norm but because we’re not. To be treated as if we are and be put in checklists as if we are is contrary to the very thing RARE disease protocol means.
You are definitely at war. Good thing you aren’t fighting this war alone! May I use your case for as an example of asked for one at the RDLA meeting in DC at the end of the month?