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

Kevin Mead

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

Information - newsletter, website, booklets brochures, annual patient/doctor meeting. Personal support. Referrals to experts We advocate for patients as members of the National Health Council, the Coalition of Skin Diseases, the National Autoimmune Alliance, and internationally, with the International Alliance of Patient Organizations.

Population(s) Served
People with diseases and illnesses
Caregivers

Increase pemphigus and pemphigoid awareness among the general public and medical community.

Population(s) Served
Adults

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.

Total revenue earned to support advocacy efforts

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Awareness

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

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

Total dollar amount of grants awarded

This metric is no longer tracked.
Totals By Year
Related Program

Patient Support

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Foundation and Corporate Grants

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.

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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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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International Pemphigus & Pemphigoid Foundation

Board of directors
as of 7/8/2021
SOURCE: Self-reported by organization
Board chair

David Baron

Mirella Bucci

Nature Chemical Biology

Mindy Unger

No Affiliation

David Baron

Virgin Airlines

David Sirois

New York University

Sonia Tramel

Ramesh Swamy

Laurence Gallu

APPF - France

Mert Erogul

Physician

Michael Rigas

Retired

Carolyn Fota

Government Employee

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 ? Yes
  • 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 7/1/2021,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 07/01/2021

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data
  • 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.