Each year, doctors find a brain tumor in over 200 Rhode Islanders and a spine tumor in even more. Nonetheless, these potentially devastating tumors can be considered “orphan diseases”: They afflict relatively few people compared to other medical conditions and so attract fewer resources to fight them. Consequently, as these patients and their families wage what may be the struggle of their lives, many of their needs go unanswered.
In Rhode Island:
- People who are grappling with a tumor of the brain or spine lack local support groups for interacting with others who understand the special challenges they face..
- Patients and their relatives have few sources of Rhode Island-specific information to help them make crucial decisions, find top-quality treatment near home, and locate clinical trials.
- Even middle-class, insured families can suffer financial hardship when costly medical bills pile up, particularly if the illness keeps a patient or caregiver from earning a paycheck.
- Researchers could use more funding to identify risk factors within the state for these possibly disabling or life-threatening disorders.
- Patients with brain or spine tumors await additional clinical trials of promising remedies, since drug companies tend to focus on other, more common diseases.
A state that proclaims “hope” as its motto can do better than this. The Rhode Island Brain and Spine Tumor Foundation (RIBSTF) puts hope to work for patients and their loved ones. We strive to make a big difference in the smallest state by offering information, inspiration, support, and practical help for Rhode Islanders who have been affected by these tumors.