Krabbeconnect

Patient engagement: providing information and resources for krabbe disease through Krabbeconnect website, facebook, and social medial channels. Engagement with families affected by the disease by offering support and connections for managing care of the patients. Resources include contact information for clinical experts, experts in research, current research literature via the resource library, and opportunities for clinical trials in the disease space. Krabbeconnect also interacts with the community through our international liaison, outreach director and patient engagement manager.

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 supporet research and advancements in treating krabbe disesase.

Patient advocacy and advancement: board members routinely attend conferences and meetings that involve the rare 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 several large organizations, i.e. Nord, global genes, ulf, world lysosomal storage disease to enhance the advocacy and education of krabbe disease.