The Beyond Batten Disease Foundation (BBDF) is sponsoring Care Beyond Diagnosis in its efforts to draft international guidelines to help clinicians counsel and treat patients with CLN3 disease, or juvenile Batten disease.
Based on clinical evidence and consensus-based recommendations, the guidelines are designed to improve patient care and disease management, as well as facilitate reimbursements.
“Having the support of BBDF is a huge achievement for our team,” Jeffrey Donohue, co-CEO of Care Beyond Diagnosis, said in a press release. “Obviously, the financial commitment is important for us to keep the program going, but looking ahead towards the publication of the guidelines, BBDF will be instrumental in dissemination of the guidelines into family/caregivers’ hands. Engagement from the patient community is a necessity in guideline development.”
Read the full article here.