Pompe Support Network joins new Healthcare platform to bolster patient care for GPs

Pompe Support Network joins new Healthcare platform to bolster patient care for GPs

Posted On: 05/11/2021 Recently Posted!

Pompe Support Network has joined up with Cognitant as one of its bank of approved content partners for its trusted health information, Healthinote.

Cognitant has issued the following Press Release:


Health information platform adds five new rare disease partners to bolster patient care for GPs

Cognitant has now added five rare disease charities to its bank of approved content partners as it builds the go-to source for trusted health information, Healthinote.

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

The digital tool, which is integrated with the triaging and remote consultation company, eConsult, can be accessed by over 3,000 GP practices to serve over 29 million patients in the UK. It helps to provide GPs and patients with recommended, trusted, clear information, that can be viewed outside of consultation time.

Healthinote is part of Cognitant’s broader mission to empower people to take control of their health through a deeper understanding of their condition and treatment.

There are over 7,000 known rare diseases and it is reported that 1 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 4 years, often because symptoms may not always be evident to healthcare professionals or GPs.

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 aim to change this for patients and their families.

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.

Healthinote 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.


John Lee Taggart, Communications and Campaigns Manager from Niemann-Pick UK said:

“A Niemann-Pick diagnosis, like many rare diseases, can initially be both a bewildering and isolating experience for patients, families, and their loved ones. Trustworthy information and support networks you can rely on become essential. We believe our charity’s partnership with Healthinote will improve access to vital and verified information for both patients and health professionals alike, and will therefore broaden the community of individuals we support.”


Dr William Evans, Chair of Niemann-Pick UK (NPUK) said:

"As a GP, it is invaluable to have access to the Healthinote database of health information and tools that I know has been verified for healthcare professionals and patients. This helps me to give the right information to patients and carers, at the right time.”


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:

"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."