Rare disease Archives - Page 9 of 12

Mapping the clinical and emotional journey to better understand lived experience

When a person enters the healthcare system (for any reason, at any time) they are automatically joining a care pathway. Irrespective of the disease area, the purpose of the care pathway is...

Keeping calm and carrying on: COVID-19 and approaches to CME/CPD during a viral outbreak

As the incidences of the Coronavirus COVID-19 are growing, it’s a good time to reflect on its effects on CME/CPD to the global community. Conferences and meetings are being cancelled – in...

Delivering change through better rare disease communications

OPEN Health’s Richard Jones, Gemma Allen and Charlotte Richards discuss how pharma can utilise tools, channels and stakeholders to deliver change and enable better outcomes. Many innovative therapies are being launched in...

My Dad was ‘one in a million’, as the saying goes. But actually he was one in 300 million (of patients worldwide with rare disease)

Rare disease day, traditionally the last day of every February, is fast approaching. Last year I wrote about my dear friend Tori, who was diagnosed with a rare post-natal condition called SCAD (Spontaneous...

The role of medical affairs in positive and appropriate engagement with patient advocacy groups

Following a series of workshops at a recent Medical Affairs Professionals Society (MAPS) Congress in Amsterdam, workshop leaders Gavin Jones, Dr Alexandra Safronova and Professor Peter Rutherford share their lessons learnt on...

OPEN Health’s response to the FDA’s guidance on long term follow up post gene therapy

The FDA has published their industry guidance on the topic of long term follow up (LTFU) post gene therapy. Please see a link to the full guidance below. In summary, they are...

Improving healthcare communications in rare disease and orphan drugs

Patient advocate and masters graduate Benjamin James conducted a critical review looking at the role of communications in rare disease when communicating orphan drug developments. Here he shares his insights: We are...

Spotlight interview: 15 minutes on healthcare communications in gene therapy

Gavin Jones, Director of Rare Disease, OPEN Health takes 15 minutes to answer some key questions on healthcare communications in gene therapy 1. Why is the commercialisation of Gene Therapy and other...

Spotlight interview: 15 minutes on digital in medical communications

Gemma Allen, Head of Digital Communications, OPEN Health takes 15 minutes to answer some key questions on digital in medical communications 1. How have digital elements in medical communications evolved over the last...

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