patient groups Archives -

New research from The Patients Association, supported through sponsorship provided by Novo Nordisk and ENGINE MHP, looks at

New study reveals patients’ changing needs during COVID-19

https://pharmaphorum.com/views-analysis-patients/new-study-reveals-patients-changing-needs-during-covid-19/

Patients/ Views & Analysis/ Views and analysis

Education as the solution to the rare disease ‘diagnostic odyssey’

Amanda Barrell patient groups, patient organisations, scleroderma 0 Comment

It took more than a year for Don Legere to receive a diagnosis of scleroderma, a rare disease

Education as the solution to the rare disease ‘diagnostic odyssey’

https://pharmaphorum.com/views-analysis-patients/education-as-the-solution-to-the-rare-disease-diagnostic-odyssey-scleroderma/

Digital/ Patients/ Views & Analysis/ Views & Analysis/ Views and analysis

BMS launches digital Advocacy Exchange for patient groups affected by COVID-19

George Underwood BMS, Bristol-Myers Squibb, coronavirus, COVID-19, Digital Health & COVID-19, Gryt Health, patient groups, patient organisations, Pharma’s Digital Response to COVID-19 0 Comment

Bristol Myers-Squibb and digital health firm GRYT Health have teamed up to develop an ‘Advocacy Exchange’ virtual platform

BMS launches digital Advocacy Exchange for patient groups affected by COVID-19

https://pharmaphorum.com/views-analysis-digital/bms-launches-digital-advocacy-exchange-for-patient-groups-affected-by-covid-19/

News/ News/ Patients

Industry and patient groups collaborate on new guidance for interaction

George Underwood comms, IAPO, IFPMA, patient groups, patient organisations 0 Comment

The International Federation of Pharmaceutical Manufacturers and Associations (IFPMA) and the International Alliance for Patients’ Associations (IAPO) have

Industry and patient groups collaborate on new guidance for interaction

https://pharmaphorum.com/news/industry-and-patient-groups-collaborate-on-new-guidance-for-interaction/

News

Call for mandatory disclosure of industry funding of patient groups

Richard Staines Funding, patient groups 0 Comment

Experts have warned that few patient groups have formal policies governing corporate funding and financial transparency, despite widespread

Call for mandatory disclosure of industry funding of patient groups

https://pharmaphorum.com/news/call-for-mandatory-disclosure-of-industry-funding-of-patient-groups/

Patients/ R&D/ Views & Analysis/ Views & Analysis/ Views and analysis

Bridging the gap between industry and charities: Enabling PPI in research

Amanda Barrell charities, patient engagement, patient groups, PPI 0 Comment

Public and patient involvement (PPI) in clinical research is the new normal, but bridging the gap between how

Bridging the gap between industry and charities: Enabling PPI in research

https://pharmaphorum.com/views-analysis-patients/bridging-the-gap-between-industry-and-charities-enabling-ppi-in-research/

Views & Analysis/ Views and analysis

Why pharma isn’t collaborating with patient organisations as much as it should

George Underwood Accenture, patient centricity, patient engagement, patient groups, patient organisations 0 Comment

Patient centricity has rapidly gone from a fringe idea to a fundamental principle across the industry, but are

Why pharma isn’t collaborating with patient organisations as much as it should

https://pharmaphorum.com/views-and-analysis/why-pharma-isnt-collaborating-with-patient-organisations-as-much-as-it-should/

Patients/ Views & Analysis/ Views and analysis

Building our own community for an ultra-rare disease

Mike Smith patient groups, patient insights, ultra-rare disease 0 Comment

Bo Bigelow shares the story of his daughter Tess, who has an ultra-rare genetic disorder with only 51

Building our own community for an ultra-rare disease

https://pharmaphorum.com/views-and-analysis/building-our-own-community-for-an-ultra-rare-disease/

Patients/ Views & Analysis/ Views and analysis

Transparency creates fruitful pharma-patient group partnerships

Amanda Barrell charities, collaboration, patient groups 0 Comment

Collaboration between pharma and patient organisations can yield fantastic results – but conflict of interest concerns can stop

Transparency creates fruitful pharma-patient group partnerships

https://pharmaphorum.com/views-analysis-patients/transparency-creates-fruitful-pharma-patient-group-partnerships/

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