For our children with SANFILIPPO syndrome, families are the linchpins of their lives.  But they are also bear all of the difficulties and suffering, starting at the time of diagnosis: psychological difficulties, difficulties finding information and understanding this complex disease, difficulties managing the many symptoms that children develop, difficulty improving quality of life for themselves and for the entire family, difficulty integrating children in social and school life, difficulty managing their own professional lives as parents.  --> Coping with the Diagnosis

Families are essential players in the care of a child.  They are truly partners in care-giving; that is why they need information, and training, in order to fulfill that central role in ensuring the quality of life of a sick child.  --> Managing symptoms for the best

Families need all resource persons to lend an ear and give support in order to improve their everyday lives:  health professionals, social services, educational specialists and teachers, and, of course, other families.  Exchange of experience, observations and information avoids solitude for families faced with this very serious illness, and gives them more efficient means not only to manage it, but also to fight it.  In the past few years, Alliance SANFILIPPO has been working in cooperation with Eurordis to develop a community of families via Internet in order to promote exchange and to enhance the value of that exchange to the benefit of all. --> The Community of SANFILIPPO families

Families and children are essential players in research, not only as experts on the disease who can assist in developing projects, but also as participants in the projects themselves. --> Participating in Research

Families are committed to advancing public policy on medical research and health for rare diseases.  They are involved above and beyond the fight against the illness that concerns them, as activists in the wider community of rare diseases.  They have already won major battles, but there is still a vast amount of work to do…  --> Commitment to Health/Research Policies

This chapter was developed using feedback on experience from parents; it was developed to be an information relay from families for families.