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Rare disease charities join health information provider

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Health information provider Cognitant has added five rare disease charities to its bank of content partners.

The provider is working to become the go-to source for trusted health information using its digital platform, Healthinote.

A spokesperson for the company said Healthinote is integrated with the triaging and remote consultation company, eConsult, which helps provide GPs with clear information, that can be viewed outside of consultation time. 

The charities, which include AKU Society, Niemann-Pick UK (NPUK), Pompe Support Network, The Cure and Action for Tay-Sachs (CATS) Foundation, and Support and NCBRS Worldwide Foundation, join a bank of 40 partners for the company.

There are more than 7,000 known rare diseases and it is reported that one in 17 people will be affected by a rare disease at some point in their life.

Many individuals experience ‘diagnostic odyssey’ with the average time to receive a rare disease diagnosis taking four years, often because symptoms may not always be evident to healthcare professionals

Daniel Lewi, who set up a rare disease charity when his daughter was diagnosed with Tay-Sachs and has recently joined Cognitant, highlights how important it is to find accurate information about rare diseases.

He said rare disease patients face unique challenges in their everyday lives and information is hard to come by. By adding trusted sources of information from key rare disease charities in this field, Cognitant aims to change this for patients and their families.

“Accessing the right health information at the right time is vital for any family when they receive a rare disease diagnosis which can be a very stressful and overwhelming time.

“It is essential that they are supported with information about the disease that is reliable, clear, engaging and easy to understand. Healthinote will play a key role in providing the rare disease community with up-to-date information which is accurate, accessible and from a trusted source.” 

The UK Rare Disease Framework, published earlier this year, outlines the need to increase awareness of rare diseases through digital resources among healthcare professionals. The framework also highlights the value at providing educational and support materials on how best to care for a rare disease patient in digital formats.

A spokesperson for Healthinote said the platform can enable healthcare professionals to provide the best information for rare disease patients at a crucial point in their journey, which is often chaotic and overwhelming.

The aim is to help people of all ages and abilities to have the tools to understand more about their disease or illness and manage their health effectively by empowering them to take control of their own health. 

Lee Reavey, co-founder and chief executive of NCBRS Worldwide Foundation said: “With fewer than 220 confirmed cases worldwide, even most of the medical professionals have never heard of Nicolaides-Baraitser syndrome (NCBRS).

“This is why we are proud to become a partner of Healthinote, many of our families have waited years for a diagnosis and when they do receive it, it can feel bewildering and hard to find all the information they need.

“We truly believe this partnership will enable reliable, trustworthy information that is all in one place to be accessible by patients and medical professionals alike.”

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