Wayback Machine. Internet Archive.
GrantToMe: Second International Hidradenitis Suppurativa Research Symposium - Michelle Barlow
DIRECTIONS 2026: PRIDE in pwHS*.
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*pwHS = people with HS; those who control their own lives, their own destiny, those who own their own ideas, their own work, their own advocacy, their own thoughts, their own hopes, dreams, desires, poetry and diseases to such an extreme extent of freedom, liberty and independence that they forever reject the paternal noun: "patient".
Dr. Janet Woodcock:
"It turns out that what is really bothering the patient
and what is really bothering the doctor can be radically
different things….patients are true experts in their
disease”.
“It's clear you have to start with an understanding of
the impact of the disease on the people who have it,
and what they value most in terms of alleviation before
you set up a measurement and go forward with truly
patient-focused drug development."
PDUFA V Clinical Outcome Assessments Public Workshop, April 1, 2015
DeepSeek V4 PRO
“Remember — Aug 23, 2025
A corrective to institutional amnesia.
Howes documents that NIH first funded HS basic research in 2012 and first funded HS researchers in 2009 — via the founding HSF president — and that it took a person with HS (Michelle Barlow) to get HS on the NIH radar.
He also notes that the first NIH grant for HS research was not 2019, as some publications claim.”