International Pemphigus & Pemphigoid Foundation
Heal Our Skin
Programs and results
What we aim to solve
To improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Patient Support
The IPPF offers a variety of free patient services to help patients live an active, productive life. These include our Peer Coach program, Patient Education Webinars, local and regional support groups, Find a Doctor map, annual Patient Education Conferences, and educational resources. These are just some of the ways to connect with the pemphigus and pemphigoid (P/P) community.
Awareness
The IPPF Biopsies Save Lives program seeks to accelerate diagnosis time of pemphigus and pemphigoid (P/P) patients. The average P/P patient sees five doctors over ten months in search of a correct diagnosis. Since the majority of P/P patients present oral symptoms first, the Biopsies Save Lives program focuses on pemphigus vulgaris (PV) and mucous membrane pemphigoid (MMP)—two forms of P/P with increased presentation in the mouth. PV/MMP patients often see a dentist as one of their first clinician contacts. Outreach is therefore directed to dental professionals though student and continuing education, who have the unique opportunity to shorten diagnosis times.
Advocacy
Advocacy is defined as public support or recommendation for a particular cause. Advocacy is different from lobbying, which looks to influence a particular elected official or legislation. Advocacy can take place on local, state, or federal levels of government. The IPPF mainly advocates for patients at the federal level, but we encourage our community to support grassroots efforts through various umbrella organizations.
Research
Before new treatment therapies can be developed, investigators need to better estimate the prevalence of P/P, study their pathophysiology, understand treatment patterns, and assess the burden of these diseases on patients. The IPPF encourages research by conducting our Natural History Study, hosting scientific symposia, periodically offering research grants, and maintaining a library of clinical trial information for researchers and healthcare professionals.
Where we work
External reviews

Our results
How does this organization measure their results? It's a hard question but an important one.
Number of people on the organization's email list
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Patient Support
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of Facebook followers
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Patient Support
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback
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What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, It is hard to come up with good questions to ask people, It is difficult to identify actionable feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
International Pemphigus & Pemphigoid Foundation
Board of directorsas of 06/08/2023
David Baron
Laurence Gallu
Mindy Unger
No Affiliation
David Baron
Virgin Airlines
Sonia Tramel
Ramesh Swamy
Laurence Gallu
APPF - France
Michael Rigas
Retired
Staci White
Badri Rengarajan
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Sexual orientation
Disability
Equity strategies
Last updated: 06/08/2023GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.