IT Project Manager with hemophilia involved in advocacy efforts for people with blood disorders.
Walnut Creek, CA
Joined January 2018
- Tweets180
- Following108
- Followers174
- Likes2.5K
Randall Curtis retweeted
Elon Musk doesn’t want this video shared because he’s trying to help Trump win in November. It would be a damn shame if everyone shares it. nitter.gq/piyushmittal/status/18…
Randall Curtis retweeted
They say old age isn't so bad when considering the alternative...
In our latest podcast @ljpembroke is joined by @WillMcKeown & @Factor8Curtis to discuss the challenges the #hemophilia community are set to face with an increasingly ageing population
https://nitter.gq/t.co/e2b3riGxm4
Meeting with global investigators at McMaster University in Canada to continue the work of @PROBEstudy. Adding more countries to the existing 102 in order to provide patient reported outcomes to all countries in the World Bleeding Disorders Registry (WBDR).
Developing the National Research Blueprint with Dr. Donna Di Michele and NHF in Washington, DC. Including the community voice from Subject Matter Experts.
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Visiting my mentor Dr. Charlie Abildgaard. Pioneer hemophilia treater. Worked in his coag lab in 1975.
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Based upon a passing recommendation by Prof. Makris, I have read “How Britain Really Works”. One review in it found “no culture of listening to complaints or acting in response to them”. In contrast, we in the US are constantly bombarded with satisfaction surveys at every turn.
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the truth is:
we did all that
but we did it
bleeding
we did it
afraid
excerpt from When We Were Your Age
by Mary Mackey
1.67 million tested in the USA! That’s like half a percent, or is my math off? – at Walnut Creek, CA
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Deon York presenting the use of PROBE for a case study at the Global Haemophilia Advocacy Leadership summit in Lisbon. @PROBEstudy – at Lisbon, Portugal
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Take a train, a bus or crawl, instead of Manchester airport. The Fast Trak line is a joke. Passengers stack up while you need to take your tablet AND power cord out. Then half of your clothes off. Had to take apart factor like I have traveled with since 1986. Job security?
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Honored to serve on the Bayer Hemophila Patient Council meeting in Lisbon. Genuinely interested in the patient voice!
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My oral presentation at ASH this morning was on whether Hemophila B is clinically less severe than Hemophilia A. Statistically significant lower ABR, less hospital stays and lower costs. I want to change my mutation.
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Dr. Steven Pipe addressing Hemophilia caNEXTions on potential funding for gene therapy in the largest state in the Union (4,000-6,000 people with hemophilia).
We’re looking for people with hemophilia or clinicians that treat them in American Samoa. We want to share the successes from Guam, the Northern Marianna Islands and Fiji. Please contact me @Factor8Curtis if you can help. Thanks.