Form 990 for tax year 2022

Totals

Total revenue

$270,986

Total expenses

$527,048

Contributions and grants received

$266,086

Grants paid

$30,000

Program service revenue

$0

Investment income

$0

Other revenue

$4,900

Total assets, end of year

$487,255

Total liabilities, end of year

$50,829

Net assets or fund balances, end of year

$436,426

Program services expenses (Part IX)

$373,496

Management and general expenses

$98,134

Fundraising expenses

$55,418

Program service expenses (Part III)

$373,496

Program services were 70.9% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• In 2022, PFIC Network provided program services in the areas of peer support, education, outreach, advocacy and research to further our mission of improving the lives of patients and families affected by PFIC worldwide. Through our peer support program, we launched monthly Zoom support groups led by a facilitator and began offering 1:1 Zoom coaching sessions for families that need additional support. We continue to offer financial assistance and care packages to PFIC patients and families in need. A major initiative for our advocacy program was hosting the International Alliance series of virtual meetings. These meetings gather international patient leaders to discuss their country-specific issues and collaborate on shared solutions. This led to the development of a partnership with PFIC Italia to expand our financial assistance program to international recipients starting in January 2023. Through our outreach, advocacy and education programs, we launched the inaugural session of Project REACH (Research, Education, Advocacy, Collaboration, and Hope), a virtual workshop series and needs assessment in India and Pakistan to help create an advocacy action plan for local patient leaders, educate patients about available resources and build relationships between patients and providers in these underserved countries. Project REACH was supported by a RARE Impact Grant from Global Genes. 2022 was a significant year for our research program. We hosted our first science-focused conference, bringing PFIC researchers, clinicians and industry stakeholders together with PFIC patients and families to discuss unmet needs of the patient community and to provide updates about ongoing PFIC research. It was a hybrid meeting with 60 in-person and 25 virtual participants from all over the world. We relaunched our patient registry in April 2022 on a new platform (REDCap) that improves the quality of the data collected, allows us to collect longitudinal data and gives us better ownership and control of our registry data. We also began a major translation project that will allow us to offer the registry in Italian, Spanish and Polish in 2023. We disbursed the first $30,000 PFIC Network Annual Small Grant towards PFIC research and announced another round of that funding opportunity that will accept applications in 2023.

  Expenses $373,496 · Grants $30,000

As filed on the 2022 return.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those.

Grants on this return

No itemized grants to organizations on this return.

Provenance

Return type

form_990

Tax year

2022

Filed

13 October 2023

IRS schema version

2022v5.0

Source object

202322899349300932

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