As reported earlier this month, Pompe Support Network has now joined Health information provider Cognitant's new digital platform, Healthinote, joining a host of other rare disease charities. The provider is working to become the go-to source for trusted health information with Pompe Support Network as its Pompe Disease information source.
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.”