Rob Howes (@RJ_Howes) header
Rob Howes (@RJ_Howes) profile picture

2005 co-founder HSF Inc., San Diego, that NGO no longer lives. I-Human. Not pharma. Hasten Hidradenitis Suppurativa Research NOW! Speed = Distance / Time

Australia
Joined November 2025
Photo by Rob Howes (@RJ_Howes)Photo by Rob Howes (@RJ_Howes)Photo by Rob Howes (@RJ_Howes)Photo by Rob Howes (@RJ_Howes)Photo by Rob Howes (@RJ_Howes)Photo by Rob Howes (@RJ_Howes)Photo by Rob Howes (@RJ_Howes)Photo by Rob Howes (@RJ_Howes)Photo by Rob Howes (@RJ_Howes)Photo by Rob Howes (@RJ_Howes)
Replying to @RJ_Howes
Blogging since 2016 about #HidradenitisSuppurativa on Google+, Facebook, Twitter & Substack. Style is variable, experimental, unusual, aberrant & sui generis. Substack documents my evolution into a dissident advocate, a satirist dismantling the 'HS Complex'. #PWHS #NotPharma
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🆕 Cochrane #SystematicReview: Pharmaceutical industry information and promotional strategies aimed at prescribers cochranelibrary.com/cdsr/doi… Gifts/payments from pharma companies to doctors increase INAPPROPRIATE #prescribing & how many prescriptions doctors write 💰🎁 #pharma
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Rob Howes retweeted
“You’ll take the job, clean the stables? Go backwards, go forwards, do whatever is necessary? It’s your generation, after all. Your legacy.” John Le Carré, Tinker, Tailor, Soldier, Spy. burningdownthehowes.substack…
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Rob Howes retweeted
Blogging since 2016 about #HidradenitisSuppurativa on Google+, Facebook, Twitter & Substack. Style is variable, experimental, unusual, aberrant & sui generis. Substack documents my evolution into a dissident advocate, a satirist dismantling the 'HS Complex'. #PWHS #NotPharma
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About Me-Rob Howes. 2005 co-founder of the first global medical and scientific foundation for Hidradenitis Suppurativa based in San Diego, CA. #HidradenitisSuppurativa #PWHS #NotPharma web.archive.org/web/20051218…
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“You’ll take the job, clean the stables? Go backwards, go forwards, do whatever is necessary? It’s your generation, after all. Your legacy.” John Le Carré, Tinker, Tailor, Soldier, Spy. burningdownthehowes.substack…
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Sometimes a metaphor is just a metaphor. Sometimes a spoon is just a spoon. But allegory can exist even if there was no intent to be allegorical. robertjameshowes.substack.co…
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What Sgt Peppers Lonely Hearts Club Band would look like if @thebeatles came from Moscow instead of Liverpool.
🤖 Made with AI
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"Drug targeting" is Orwellian Doublespeak. #ShowerThoughts
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I had no desire to be a founder of a patient nonprofit. It's just not my skill set. I had already moved mountains in the past, had already achieved the impossible, and helped create something from absolutely nothing in 2005. linkedin.com/posts/rob-howes…
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'If anyone on LinkedIn reads my article, it will be inprivate mode cos they don't wanna give me even one genuine impression'. linkedin.com/posts/rob-howes…
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Toward an artificial Intelligence Forensic Transparency Engine for Hidradenitis Suppurativa: F.E.T.I.S.H. linkedin.com/posts/rob-howes…
🤖 Made with AI
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Some rare diseases live on a planet where grass grows in opposite directions, where its roots begin in the stratosphere and its leaves stretching but never ever entering the Earth’s crust.
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It would be nice to think this is ancient history, but alas, this external marketing humblebrag was first made on the 22nd of June 2017 and remained live on the internet until the 19th of October 2021, during the pandemic.
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At the bottom of their humblebrag is an invitation to share the news. Which I did, on Twitter/X and Facebook, with frequency. 🤣🤣 web.archive.org/web/20170622…
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Moral of the story is, if a nonprofit is going to astroturf, make sure the pharma funder is onboard with internal marketing only.😂 web.archive.org/web/20170622…
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Rob Howes retweeted
burningdownthehowes.substack… Thank you, Michelle Barlow, United States, for: -showing people with HS have no limits -showing that people with HS-led research has value -for co-founding the Hidradenitis Suppurativa Foundation, Inc, San Diego, EIN: 20-3246772 21 years ago -for being the founding President of the Hidradenitis Suppurativa Foundation, Inc, San Diego, EIN: 20-3246772, 21 years ago -for putting HS on the National Institutes of Health research agenda 17 years ago -for being a pioneer, a leader, a partner & friend.
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Rob Howes retweeted
burningdownthehowes.substack… 2007. The HSF Inc. San Diego, Resolution on HS to the US Congress. Resolution is signed by Michelle Barlow, founding President of the HSF. 'Proposed resolution for a national Hidradenitis Suppurativa Awareness Month.
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Rob Howes retweeted
burningdownthehowes.substack… 2009 HSF Inc. (San Diego) Second International Hidradenitis Suppurativa Research Symposium Part-funded by the NIH. Funding awarded to Michelle Barlow, San Diego. "Both Michelle and I felt it was of extreme importance that the US government step up and play a part in the (HSF San Diego) mission & goals. It was not public relations. It was public health, and it was public justice." RjH "People with HS have an inherent dignity and inalienable rights. People with HS have both the right to and need of, freedom, justice and peace." RjH
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“To diagnose hidradenitis one first and foremost has to think of it.” In 2001, Dr Jan von der Werth had expressed one of the most important observations about HS in the 21st century. burningdownthehowes.substack… #pwhs #NotPharma I paraphrased it. *With awareness, diagnosis of Hidradenitis Suppurativa becomes possible. *With HS Awareness, diagnosis is possible. *Think of HS. Diagnose HS.
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burningdownthehowes.substack… "If you think in terms of a year, plant a seed; if in terms of ten years, plant trees; if in terms of 100 years, teach the people."
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Rob Howes retweeted
everything I need to know about Hidradenitis Suppurativa? and your gunna give me all that in a 3-minute video or a listicle?
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