With early detection and proper treatment, people with cystinosis can avoid serious health complications, such as kidney failure and neurological damage. Tackling the disease While the ultimate goal of CF is to find a cure for cystinosis, its primary function is to support individuals and families seeking information. Member families are given information about cystinosis and advice on how to care for their family member with cystinosis. CF also refers families to other organizations and services that can help them and it publishes a member newsletters as well. Through the distribution of literature, the general media, and receptions at medical meetings, CF works to educate the medical profession and the general public on cystinosis.
CF is active in raising funds to promote research on causes and treatments of cystinosis.
As a member of NORD, a support and information organization for people with rare diseases, and the Alliance of Genetic Support Groups, CF is able to draw from other sources of assistance to benefit its members. One of the many goals of CF conferences is to bring together people with cystinosis and their families to share their experiences living with this chronic illness. For parents, being able to interact with expert doctors and other professionals on cystinosis is also a major incentive to attend. CF plans to continue to broaden the availability of local conferences so that every family who has a member with cystinosis will be able to attend at least one, if not now then in the near future. In infantile cystinosis, symptoms include excessive thirst and urination, failure to thrive, rickets, and episodes of dehydration.