The Cystinosis Research Network (CRN) is offering scholarships to prospective college students who have been impacted by the condition. The organization offers two different scholarships, one for a student that has been diagnosed with cystinosis and another for a student who has a sibling diagnosed with the disease. Each has a value of $1,000. The CRN’s scholarship program has been active since 2005. The scholarships are meant for students who are currently attending an accredited college or vocational program or who are planning to begin. You can learn more about the program here.
Cystinosis is a genetic disorder characterized by the unusual buildup of cystine, an amino acid. The amino acid builds up within lysosomes, an organelle found in almost all animal cells. Children with the condition generally grow poorly and their kidneys do not function normally. Cystine crystals begin to accumulate in the body including the eyes, which can lead to extreme light sensitivity. If left untreated, the kidneys start to fail around age ten. Typically, the condition is treated with cysteamine. While not all forms of the disease result in impaired kidney function, a transplant may be necessary if they start to fail. You can learn more about this illness by clicking here.
The Cystinosis Research Network is an organization that is committed to providing support and advocacy for research, educating the public about the condition, and assisting families that are affected by the illness. It is a non-profit organization operated entirely by volunteers. You can learn more about the CRN by visiting their website at cystinosis.org. While treatments can allow most of those affected to live relatively healthy lives into adulthood, there is still no cure for Cystinosis, and treatment options are still limited and could be much improved. The quality of life for patients could also be enhanced as treatments are costly and also have some adverse side effects.
Non-profit groups like the CRN often help fill in the gaps of support that people dealing with rare diseases desperately need. Rare diseases often have fewer treatment options and recognition in the medical system, so often extra support from outside groups is of great value.