Rare Disease Patient Talks

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Rare Disease Patient Talks - 5th of May

5-7pm, 5th of May, virtual

This will be a short series of talks from people with lived experience of rare disease. They will each be sharing what they most want people, especially medics, to know about their life as a rare patient. This will help future doctors understand the real impact rare diseases, and their care, can have on peoples' lives, beyond a page in a textbook.

This talk is highly useful for medics, but anyone is welcome to attend.

Speaker announcements and meeting links to follow.

Email *

Name *

Email address - we will send the meeting link to this address *

I understand that details of real patients will be discussed, and will remain respectful and follow confidentiality by not sharing sensitive or identifiable information from this talk without specific permission. *

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