Xpert Patient

Training to become an Expert Patient in the Medicines Research & Development Process with #EUPATI #ClinicalTrials #Genomics #RareDisease #APL Also @Noirin0Neill

[Xpert Patient @XpertPatient]

A sense of immunity: Scientists are detailing the immune system as never before : Nature Medicine : ... | @scoopit http://t.co/UtbuPEpwef

[Xpert Patient @XpertPatient]

Learning about efficacy assessment, ADME, toxicology, safety/pharmacology in non clinical development #EUPATI @eupatients

[Xpert Patient @XpertPatient]

Learning about the basic principles of non-clinical development on my #EUPATI course @eupatients Any links to good articles welcome!

[Natasha Wilson @N_Wilson94]

@XpertPatient Completely agree & an offer of training maybe? Many "thrown in to" caring role, no prior experience, knowledge.. Daunting!

[Xpert Patient @XpertPatient]

@BeeForBattens thanks for following. I am also @Noirin0Neill looking forward to some great chats. My #Leukaemia was a #RareDisease

[Xpert Patient @XpertPatient]

@BrainwavesNI thanks for the follow!

[Xpert Patient @XpertPatient]

@medical__health Thanks for the follow!

[Xpert Patient @XpertPatient]

@KylaHollywood @speccymcspec @chickyrock1974 @Imonlyslightly @22Q11_Ireland @LiamsLodge @auntie_sadie Tx for chat & bye bye #NIRDChat

[Xpert Patient @XpertPatient]

Q3: Patients need to get their voice heard by the pharmaceutical companies, regulators & all policy makers. #NIRDChat

[Xpert Patient @XpertPatient]

Q3: Since 2000 more than 850 orphan drug designations have been granted by EU Commission but less than 100 orphan drugs on market #NIRDChat

[Xpert Patient @XpertPatient]

Q3: #PatientExperts & advocates have a role to play locally particularly those like me who are 15 months training @eupatients #NIRDchat

[Xpert Patient @XpertPatient]

Q3: #PatientExperts & advocates have a role to play locally particularly those like me who are 15 months training with #EUPATI @eupatients

[Xpert Patient @XpertPatient]

Q3: Patients need to be informed of the specific details of #clinicaltrials, consent forms can be too difficult, transparency #NIRDChat

[Xpert Patient @XpertPatient]

Q2: There needs to be more structured support for carers of patients with #RareDisease eg., counselling offered etc., #NIRDChat

[Xpert Patient @XpertPatient]

@speccymcspec are we still on Q2 Care?

[Xpert Patient @XpertPatient]

A2 Increased access to speciality treatment in rural &underserved areas providing front-line clinicians with knowledge & support #NIRDchat

[Xpert Patient @XpertPatient]

@christinezoo Education, information & awareness. If more healthcare professionals would come to the Open Days it would be start.#NIRDChat

[Xpert Patient @XpertPatient]

Q2: A role can be played by #PatientExperts & advocates acting as a go between with patient, family & medical team #NIRDChat

[Xpert Patient @XpertPatient]

Q2: As a #RareDisease and #RareCancer survivor massive need for education of our GPs & District Nurse in specific #RareDisease #NIRDChat

[Xpert Patient @XpertPatient]

@speccymcspec what question are we on? #NIRDchat