The families of children with rare diseases are e-carers. In addition to being experts in the care of their child, they are knowledgeable about the Internet.
The evolution of today’s society in which the use of information technology underlies every aspect of our lives, this technology may also have a direct, and at times disruptive, effect on the management of our health and the care of an ill family member.
The Internet is not only a repository of information such as never before existed; it is also a channel of communication, teaching, and empowerment in many areas related to our health.
We know that the main reason for information searches on the Internet has to do with questions related to health and well-being, and we recognize the need to be able to connect with the greatest possible number of families of children with rare diseases. Rare Commons allows us to:
- Inform and impart knowledge about the illness.
- Carry out team research, in conjunction with other families as well as the various physicians attending to each child.
Discover the benefits and obligations in participating in Rare Commons, as well as the work dynamics of participation in the relevant sections.