Hello,
Some of you may have heard from me before - I am working on a platform to help assist with rare diseases, especially for research and treatment development since we are often ignored, as the HNPP condition is quite rare, and the firms with a lot of resources, do not want to risk anything for us.
The hope of the platform is that it can be a place of trust where we can tackle the more scientific and statistical parts of HNPP. This can be systematic testing of home treatment, if someone has good experiences with someone, and maybe even making a 'patient-owned' dataset from things like phone health data, data from wearables etc (encrypted, kept safe and not visible to anyone the patient doesnt approve of - not even the platform itself).
However, to start this process we need to solve the 'cold start' problem - if no one is on the platform we have no statistics and no data to help eachother with. This can be solved if the platform has functionality that will make us all want to be there - whether to contribute or to get personal insights. As the aim of the project is to empower and assist the people with the condition, focusing on being useful for the patients is logical anyways.
So what functionality do you want most? It does not have to be/sound realistic, just give me an idea of what you want, and I can work towards it as best of my ability!
Take a look at r/PatientLedData to see some mockups I made a while ago, of how the platform/app might look or feel. Feedback here is also welcome
Thank you for contributing and reading!
Kind regards,
Frederik Sunesen