Realizing Our Potential in Biobanking: Disease Advocacy Organizations Enliven Translational Research.

Biobanks are increasingly powerful tools used in translational research, and disease advocacy organizations (DAOs) are making their presence known as research drivers and partners. We examined DAO approaches to biobanking to inform how the enterprise of biobanking can grow and become even more impactful in human health. In this commentary, we outline overarching approaches from successful DAO biobanks. These lessons learned suggest principles that can create a more participant-centric approach and illustrate the key roles DAOs can play as partners in research initiatives. DAO approaches to biobanking for translational research include the following: be outcome driven; forge alliances that are unexpected-build bridges to enhance translation; come ready for success; be nimble, flexible, and adaptable; and remember that people matter. Each of these principles led to particular practices that have increased the translational impact of biobank collections. The research practices discussed can inform partnerships in all sectors going forward.

The International Pemphigus and Pemphigoid Foundation.

The International Pemphigus Pemphigoid Foundation (IPFF) was founded in 1997. The IPPF lists more than 4500 members. The IPPF provides peer health coaches to aid patients in the navigation of the health care system and recommends dermatologists and other specialists in their area who are experts in autoimmune bullous disease. The IPPF hosts the largest worldwide registry of pemphigus/pemphigoid patients with biospecimen collection opportunities are planned. Twice a year the IPPF hosts formal meetings with invited speakers.