International Pemphigus & Pemphigoid Foundation

Looking to the future, the IPPF has identified six strategic goals: Reduce diagnostic delays of pemphigus and pemphigoid patients by increasing P/P awareness; Provide high-quality, targeted programs and services that improve the quality of life of those affected by P/P; Support P/P research to increase and improve treatment options and access; Support advocacy efforts that benefit both the P/P community, and the larger rare disease community; Secure the human and physical resources necessary to meet organizational goals and operational plans; Secure funding to sustain or expand current, and implement new, programs and services.

The International Pemphigus & Pemphigoid Foundation most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives. We offer; a physician referral service to help patients find the best medical care possible;provide a number of valuable and popular patient support services; publish informational brochures, pamphlets and a quarterly newsletter with news, useful information, medical updates, personal stories and more;run an annual Patient/Doctor meeting; collaborate with pharmaceutical companies on the leading edge of treating these diseases; provide up-to-date information about current clinical trials and research on the disease in which patients may be able to participate; maintain relationships with Congressional representatives and others who may be able to encourage or provide research funding.

The IPPF has identified the strengths and weaknesses of the organization. The IPPF's strengths include a dedicated staff and successful patient support and outreach programs. The weaknesses include fundraising, IPPF awareness, synergy between staff/BOD/MAB, and program measurement. The external factors affecting the IPPF are opportunities and threats. The IPPF's opportunities include enhanced fundraising, advancing research, expanded outreach and support, and developing partnerships. The IPPF faces several threats to its sustainability and growth: failure to meet stakeholder needs and insufficient funding.

To guide our decision making processes, the IPPF operates under four new strategic areas. These four areas ensure the IPPF focuses on its historical areas of service: awareness, advocacy, education, support, and research. These four new strategic areas are: Increase Disease Awareness; Provide Responsible Programming; Advance Treatment and Care; and Strengthen the Organization.

The IPPF is in the early stages of designing a new, more robust patient registry to track a patient's disease, treatment, and quality of life over time. An astonishing 97% of patients said they are willing to provide quarterly or annual updates so the information is rich with data researchers can use to better manage P/P patient care. We have also launched a new physician map for patients to find doctors in their immediate area.