PLATINUM2023

International Pemphigus & Pemphigoid Foundation

Heal Our Skin

aka IPPF   |   Roseville, CA   |  www.pemphigus.org

Mission

The mission of the International Pemphigus & Pemphigoid Foundation (IPPF) is to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

The IPPF's vision is to find a cure for pemphigus and pemphigoid.

Ruling year info

1994

Executive Director

Patrick Dunn

Main address

915 Highland Pointe Dr Suite 250

Roseville, CA 95678 USA

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Formerly known as

National Pemphigus Vulgaris Foundation

National Pemphigus Foundation

International Pemphigus Foundation

International Pemphigus Pemphigoid Foundation

EIN

94-3207871

NTEE code info

Specifically Named Diseases (G80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

To improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

Our programs

SOURCE: Self-reported by organization

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.

Population(s) Served

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.

Population(s) Served
Adults
Chronically ill people
Caregivers

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.

Population(s) Served
Chronically ill people
Caregivers

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.

Population(s) Served
People with diseases and illnesses
Caregivers
People with diseases and illnesses
Caregivers
People with diseases and illnesses
Caregivers

Where we work

Our results

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • 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

  • 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

  • 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

International Pemphigus & Pemphigoid Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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lock

Connect with nonprofit leaders

Subscribe

Build 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 directors
as of 06/08/2023
SOURCE: Self-reported by organization
Board co-chair

David Baron


Board co-chair

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

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 6/8/2023

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
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Decline to state

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 06/08/2023

GuideStar 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

Data
  • 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.
Policies and processes
  • 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.