Here's our @GaborPurman with quite the silliest of glasses but with the most serious of messages about working with patients with a rare condition and their carers. #RareDiseaseDay2021#FocusOnRare
Endorphin, serotonin, oxytocin - they all impact our health related decisions. I believe we should strive to make people feel more successful with new integrated therapeutic solutions.
A bit more serotonin feels always good.
#beliefandbehaviourchange
>7000 rare diseases exist but only 5% of rare diseases have approved treatments. Developing new treatments is definitely a challenge. Here's our very own Dr Purman who works tirelessly with Pharma and patients on those challenges.
@GaborPurman#RareDiseaseDay#EarnYourStripes
Day #25 of our awareness campaign for #RareDiseaseDay. Familial Chylomicronaemia Syndrome #FCS is a life-threatening, genetic disorder with multiple severe daily & chronic manifestations. Rare: 3,000-5,000 people worldwide. Help find them. #EarlierIsBetter https://t.co/HNyyREKgh7
We won’t shy away from difficult questions about good #patientengagement#patient relationships and experiences. We invite you to answer the poll on the ‘darkest challenges’:
https://t.co/BcyUyDmXB6
Last #efppatient#LingoBingo as we end a week sharing excuses/frustration about #patient engagement. Tc for all RT, responses, & follows. Our @NexGenHC next steps are to listen out for jargon in the Summit sessions & commit to ending their overuse to spark better engagement.
Nobody likes jumping through hoops, least of all patients who are also managing a health condition. Come and speak to @NexGenHC at #efppatient and tell us your experiences!
We all want to see a reward for our work. If patients support
pharma but don’t hear anything back they won’t feel valued. Come and see @NexGenHC at #efppatient to tell us more of the common phrases you hear. Let’s make patient engagement work for all!
@NexGenHC is busting pharma jargon at #efppatient @eyeforpharma. While you can’t promote products to patients, they are 100% of the reason your drug exists, and so should be involved in discussions on its development. Share your patient engagement frustrations with us!
It’s time for another ready for #efppatient. How many times have you approached pharma with an idea or a project that is educational or shares #patientexperience to be met with this? Let’s use the Summit as a starting point to cut the excuses and #LingoBingo
Patient journey maps are OK. Patient treatment experience maps are even better! Including the bio-psych-social elements from a patient’s experience allows you to really ensure your treatment model is working for them. #efppatient
One week to #Efppatient and here’s Tuesday morning’s #patient#LingoBingo callout. As someone with fibromyalgia and anxiety disorder I shudder when ‘patient journey’ is used to describe my experience. Do you?
Our campaign to end lingo bingo excuses for #patient engagement continues today with this irksome frustration that we hear a lot from the patients we partner with. Do you agree this is a problem?
Our mission at #efppatient London launches now. On behalf of the patients & pharma clients we work with we want to vanquish jargon (and excuses) that cause inertia in engagement. Join us in our ‘end patient lingo bingo’ What are you tired of hearing? Here’s one we dislike ...
Why can’t we pay experts for their time and contribution? Another #patient lingo bingo one we will be looking to yellow card at the #efppatient summit next week! Join us!