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Overcoming diagnostic challenges in rare diseases through innovative digital health partnerships


Overcoming diagnostic challenges in rare diseases through innovative digital health partnerships
17th March 2021
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This piece is written and sponsored by Ipsen UK
At Ipsen, we are committed to supporting patients with rare diseases throughout their disease journey – from diagnosis through to treatment follow-up. By nature of being rare conditions, many are challenging to diagnose; often, GPs are expected to spot symptoms of conditions that many never see in their entire careers. Around a quarter of people affected across Europe are thought to wait between five and 30 years for a correct diagnosis
1, and symptoms are often mistaken for other, less serious issues. In neuroendocrine cancers, for example, symptoms can include fatigue or feeling bloated and over half of patients are thought to be advised by their GP to simply come back if symptoms persist. COVID-19 has further exacerbated referral challenges, with a DATA-CAN report not ....

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Ipsen forms digital health partnership to boost rare disease diagnosis


Ipsen forms digital health partnership to boost rare disease diagnosis
10 February 2021
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Rare disease
MendelScan software is designed to integrate into NHS systems and scan patients’ electronic health records. It will be used by GPs to alert them to risk factors, enabling faster referral and diagnosis. 
Commenting on the partnership, Dr Myles Furnace, global digital health partnerships lead at Ipsen said: “Ipsen is delighted to be partnering with Mendelian to bring this pioneering technology forward for people affected by life altering, rare conditions. Every day that goes by without a diagnosis can cause immense distress for sufferers and the risk of potentially life-threatening complications. COVID-19 has made diagnosis even more challenging and new, innovative tools such as this are vital if we are going to make headway into addressing this issue. We’re thrilled to be leading the way alongside Mendelian with a tool that is f ....

United Kingdom , Rudy Benfredj , Ipsen Pharmaceuticals , United Kingdom Government , Rare Disease Framework , Digital Health , Rare Diseases , ஒன்றுபட்டது கிஂக்டம் , இப்செங் மருந்துகள் , ஒன்றுபட்டது கிஂக்டம் அரசு , ரேர் நோய் கட்டமைப்பு , டிஜிட்டல் ஆரோக்கியம் , ரேர் நோய்கள் ,

New research announced into mental health impact of rare diseases


New research announced into mental health impact of rare diseases
21 January 2021
Life sciences consultancy RBW Consulting has announced it is funding a clinical research project in partnership with Rare Disease Research Partners. The partnership will see research being conducted that aims to provide insight into how a rare disease diagnosis can affect the mental health of the patient, their family and carers.
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Mental Health
This research into the mental health impact of a diagnosis aims to develop an evidence-based best practice to better support this large patient group. 
The research will involve a group of experts including psychologists and family groups, and will be published in the second half of 2021.  ....

United Kingdom , Gemma Thorp , Tom Kenny , Rare Disease Research Partners , Rare Disease Research , Rare Disease Framework , Mental Health , Rbw Consulting , Rare Diseases , ஒன்றுபட்டது கிஂக்டம் , எம்மா தோர்ப் , டோம் கெண்ணி , ரேர் நோய் ஆராய்ச்சி கூட்டாளர்கள் , ரேர் நோய் ஆராய்ச்சி , ரேர் நோய் கட்டமைப்பு , மன ஆரோக்கியம் , றிப்வ் ஆலோசனை , ரேர் நோய்கள் ,