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Apple Store Data Privacy Profiles

Apple Store Data Privacy Profiles

Epilepsy group meets Apple’s new rules on app data privacy  Data privacy remains one of the most important issues when developing health apps. Consumers need to be able to make informed choices about the data privacy risks involved when downloading and using a health app,…

Bulgarian Group Combats Mental Health Stigma

Bulgarian Group Combats Mental Health Stigma

The Кожа (Skin) not for profit group in Bulgaria works primarily as a campaigning and advocacy group for people with mental illness. For a country of nearly 7 million people, the group calculates that there are only around 500 psychiatrists. One part of their site therefore…

Charity Tests Approaches To Building Digital Health Literacy

Charity Tests Approaches To Building Digital Health Literacy

The pandemic rapidly accelerated the trend for more clinicians to accept telemedicine. Yet research by our parent organisation PatientView confirmed during the autumn that many patient groups worldwide are extremely concerned about people who lack the technology or digital confidence to access healthcare remotely.  Looking…

Call to Action And Covid Recovery

Call to Action And Covid Recovery

Patient groups globally are not only helping their communities to deal with the pandemic, but striving to ensure that access to treatments and care continues. There’s a dual challenge of not only advocating to re-engage patients with services disrupted by Covid-19, but also taking opportunities…

Patient Groups Prepare For Patients With Long Covid

Patient Groups Prepare For Patients With Long Covid

As each month passes, we get a widening picture of emerging symptoms of `long COVID’. Gradually, long Covid communities are beginning to appear worldwide, particularly informally on social media. However, the clusters of symptoms can be diverse. So established groups are steppi ng up to…

Swedish Volunteers Bridge Language Gap During COVID

Swedish Volunteers Bridge Language Gap During COVID

Most health services struggle to translate medical materials for communities who may not be fluent in the country’s main language. By contrast, Sweden has a long-established tradition of support for patients who are not fluent in Swedish. During the pandemic, this is being underpinned by…

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…