Krabbe Connect

Patient advocacy and advancement: board members routinely attend conferences and meetings that involve the rate disease community to support the needs of the krabbe patients and their families. Krabbeconnect also participates in networking opportunities with other advocacy foundations joining together to have a voice for the patients. Krabbeconnect maintains membership with serveral large organizations, i.e. Nord, global genes, ulf, world lysosomal storage disease to enhance the advocacy and education of krabbe disease.

Research and development: krabbeconnect produced a poster to discuss the patient burden of krabbe disease. Research conducted to collect data from patients to capture the unmet needs in the krabbe community. The research will serve as a tool to clinicians, scientists, researchers, and industry to help with the advancement of new novel treatments in the krabbe disease space. Krabbeconnect is working to create a patient registry and patient focused drug development meeting with the fda to support research and advancements in treating krabbe disease.

Other program services