Disease, Disorders, Medical Disciplines

International FOP Association, Inc.

aka IFOPA

North Kansas City, MO

Mission

Fund research to find a cure for Fibrodysplasia Ossificans Progressiva while supporting individuals and their families through education, public awareness and advocacy.

Ruling Year

1989

Executive Director

Michelle Davis

Main Address

1520 Clay Street Suite H2

North Kansas City, MO 64116 USA

Keywords

malformed toes, genetic, Patient support, research, IFOPA, FOP, Fibrodysplasia Ossificans Progressiva,

EIN

59-2918100

 Number

0567958281

Cause Area (NTEE Code)

Specifically Named Diseases (G80)

Services to Promote the Independence of Specific Populations (P80)

IRS Filing Requirement

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

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Programs + Results

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Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Medical Research

L.I.F.E Awards

International Support

Public Awareness

Member Education & Support

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Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

Our goal is to find a cure for Fibrodysplasia Ossificans Progressiva.

Our strategy is to fund FOP research through continuous grassroots fundraising. With an extremely small patient community, we lack the means to mount high profile national campaigns, and instead rely primarily on local fundraising and donations from families and friends. We also work closely with international FOP communities to promote awareness and encourage international research efforts. We provide advice and support for patients and their families.

IFOPA employs an efficient and effective staff headquartered in Orlando, Florida. Governance is provided by an elected volunteer board of directors of nine to 15 members drawn from the USA and abroad. IFOPA provides a comprehensive website in more than 10 languages that includes a wide range of information regarding FOP research, disease treatments and family support. IFOPA provides an extensive Wikipedia article detailing the history of the association, our fundraising activities, and a variety of other information resources. Our Research Committee works closely with the FOP Lab at the University of Pennsylvania and with international research groups to coordinate research activities and support.

Given our strong focus on fund-raising, total donations received are our primary indicator. In recent years, annual donations have been in the range of $1,000,000+. IFOPA is recognized as the primary research supporter of the FOP Lab at the University of Pennsylvania.

In its 28 year existence, IFOPA has donated over $18 million to FOP research, and currently donates approximately $500,000 annually. Net surpluses (funds remaining after expenses) are invested to establish long-term association stability and funding future drug trials. Net assets at the end of 2015 were approximately $4.2 million. There are currently two separate clinical trials underway by Clementia Pharmaceuticals and Regeneron Pharmaceuticals

External Reviews

Photos

Financials

International FOP Association, Inc.

Fiscal year: Jan 01 - Dec 31

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  • Forms 990 for 2016, 2015 and 2015
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Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2016, 2015 and 2015
A Pro report is also available for this organization for $125.
Click here to see what's included.

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

No

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

No

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

No

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

No

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

No