Table 2.

Summary of the most needed features or feature types identified following Workshop 1.

Feature		Needs
Level 1 (medical, open information)
	Wiki space—easy to read medical information (easily grouped by types of conditions, diseases, pediatric or not; information to be constantly kept up to date); important—information on genetic risk and prevention measures	Easy to read, in lay language Easy to find relevant topics Easy to add or modify by dedicated professionals (not by community) Should link to external resources Consider “verified” button or something indicating quality
	Dedicated section to diagnosis (here we can have a grouping on symptoms as the patients suggested)	Same as above
	List of specialized centers	An easy to navigate map Should have a way to visualize simple details for each center
Level 2 (communities)
	Support groups on various topics (Based on the content interaction model: patient/caregiver can decide on topics he/she is interested in)	Very easy to quickly find relevant topics or discussions Have tags or other system to label conversations with more than one keyword to make them easier to search for Browsing feature or conversation feed for those who do not have a particular question but just want to see what is there Easy to join a discussion Quality of the conversation is important Easy to navigate to direct messaging if they want to make the conversation private
	Direct messaging option	Safe, private, easy to use Easy to connect with the forum
	Maps with various specialists to help parents (mental health specialists, lawyers, social workers, etc)	An easy to navigate map Ideally, we should have a “sign up to help” call to action for the professionals mentioned above
	A method to connect with expert clinicians	Ability to view lists with vetted clinicians that could answer the needs of the various users. The platform should provide the first point of contact and should not replace in-person clinical assessments
Level 3 (medical data)
	Search engine (transversal) for clinical trials, drugs, therapeutic methods	Intuitive way to search for various subjects (new/ongoing clinical trials, disease based, etc)