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Rare Disease Patient Group Streams Play To Fundraise

Rare Disease Patient Group Streams Play To Fundraise

Patient groups worldwide continue to be badly hit financially as most of their usual fundraising methods stopped during the pandemic. One UK group organised the streaming of a recorded play about their condition to attract donations for views. Getting Better Slowly Guillain-Barre and Associated Inflammatory…

Not For Profit Launches Charter For Digital Health Literacy

Not For Profit Launches Charter For Digital Health Literacy

For more than 20 years, the UK not for profit, the Patient Information Forum (PIF) and its member patient groups have fought to improve patient health literacy. In its recent survey it confirmed the scale of the challenge in building capacity, capability and confidence in…

Myeloma – Virtual better than reality!

Myeloma – Virtual better than reality!

Online masterclasses One positive of the Covid pandemic is the willingness of people with the right technology to engage in lively panel discussions. However, as the months pass, these are often so free range that afterwards learnings are hard to digest. By contrast, when Myeloma…

Motor Neurone Disease Association Web Apps

Motor Neurone Disease Association Web Apps

Patient Group Embraces Web App Development As software continues to improve, web apps are one option for groups to create apps quickly and cheaply. For example, in the UK, as part of its app offering, the Motor Neurone Disease Association (MNDA) has created two web…

Connecting for Clinical Trials

Connecting for Clinical Trials

Australian clinical trials app  Whenever we carry out research with patient groups, involvement in clinical trials is often near the top of each wishlist. At the same time, the industry is embracing technology to recruit and retain for clinical trials. ClinTrial Refer app Since its…

Versus Arthritis – Presenting The App

Versus Arthritis – Presenting The App

Patient Group’s Masterclass in Presenting an App Patient groups often lack the time and resources to present their apps well. Commercial developers also tend to neglect this key step, and the format limitations of app stores make it hard to differentiate apps.   So, it’s been…

How Well Are Teenagers Using Digital Health Tools?

How Well Are Teenagers Using Digital Health Tools?

Digital Health Generation The recent “Digital Health Generation” report raised concerns about how young people in the UK use apps and other digital technologies to manage their health.  Reaching teenagers On the plus side, the survey with more than 1000 English 11-18 year olds and…

Helplines Partnership Downloadable Toolkit

Helplines Partnership Downloadable Toolkit

Who can help the helplines? Our sister organisation PatientView, is currently seeking the views of patient groups worldwide on the impact of COVID-19 on how they operate, and how they are adapting to the new environment. Helplines are often a core activity of groups, and…

Miscarriage Group Supports With ‘Virtual Hugs’

Miscarriage Group Supports With ‘Virtual Hugs’

The cold prevalence data shows that most families are affected in some way by the loss associated with miscarriage. Equally, it seems that most cultures find it hard to talk about. It’s also an issue that the health app industry has sometimes failed to address…

Patient Groups Can Involve More Members Virtually

Patient Groups Can Involve More Members Virtually

If there’s any silver lining in the COVID-19 cloud, it’s a virtual one. Overnight, the demise of physical events has at the same time enabled patient groups to involve more of their members in key meetings. Moreover, virtual participants are on an equal footing, not…