Drug price increases by biopharma companies continues despite President Trump’s @realDonaldTrump appeal to top CEO’s to curb price increases. https://t.co/ahzh3oYLOU See story and list of drug prices via @business#drugprice#pharma#medicine#Meds4Kids
If you aren’t sharing data with a sense of urgency, you are missing the point. Cancer & rare disease patients live in the now. They don’t have time to wait for you to publish a paper. This is not about you. It’s about them. #CuresNotCredit
Follow your passion? Common advice, but continuous motivation is essential to accomplish the #passion. Many don’t or can’t. Why? “We should remember that one’s interests can evolve, and that one should expect challenges in the pursuit of their passion.” https://t.co/bnQRTn39uS
Follow your passion? Common advice, but continuous motivation is essential to accomplish the #passion. Many don’t or can’t. Why? “We should remember that one’s interests can evolve, and that one should expect challenges in the pursuit of their passion.” https://t.co/bnQRTn39uS
Online forums and social media are particularly important for #raredisease patients who may not know anyone else with their disease IRL —> Sometimes Patients Simply Need Other Patients https://t.co/1ITQKFU2cT
What’s the difference between #Happiness and #Pleasure ? In this #blogging @matthieu_ricard sheds light on the differences. https://t.co/LWzRHw9Jp3 #quote “Pleasure is the happiness of madmen, while happiness is the pleasure of sages.” Jules Barbey d’Aurevilly.
What’s the difference between #Happiness and #Pleasure ? In this #blogging @matthieu_ricard sheds light on the differences. https://t.co/LWzRHw9Jp3 #quote “Pleasure is the happiness of madmen, while happiness is the pleasure of sages.” Jules Barbey d’Aurevilly.
'The next words out of his mouth were ...'we have a diagnosis for Lewis'. Even writing that down now, and hearing those words again in my head makes me go cold.' Read #raredisease blog 'For seven years Lewis had no diagnosis' here: https://t.co/13jdwn9qlz
Thanks for the visit @TracyDixonSalaz. #RareDisease is getting a lot of leadership and attention in San Diego, including from you. https://t.co/K96TIOHVMc
#science is not only in the universities and for the researchers, it's not only #hopeaccess and available data! It's how science came to be and why - it's a story, someone's story that needs to be told. #openscience#letstalkscience
#DrugPrice#Pharma#medicine#RareDisease#Meds4Kids Pharma companies adjust prices of their marketed drugs. Trend this year is SAME—upward! Even for older drugs! See full story via @endpts https://t.co/ZQeScWkQap @megtirrell “Medicine for patients, not for profits.” G.W. Merck
Thank you to the #raredisease patients, caregivers & other rare advocates who spent today with us & @EveryLifeOrg at #RAREontheRoad in Salt Lake City! We enjoyed connecting with you & hope you will join us at the RARE Patient Advocacy Summit in October! https://t.co/YVKPJEoNA4
#DrugPrice#RareDisease#medicine#Meds4Kids#Acthar 97,000% price hike 🤔 See full story via @CNN https://t.co/H06d99YxXX “They're also speaking out for families...the forgotten ones who are getting pummeled by co-pays, deductibles, higher premiums and all the other expenses.”
I am one of the 7 billion human beings alive today. We each have a responsibility to think about humanity and the good of the world because it affects our own future. We weren’t born on this planet at this time to create problems but to bring about some benefit.