Overview
What is Progressive Familial Intrahepatic Cholestasis?
Progressive Familial Intrahepatic Cholestasis (PFIC) is a nonprofit organization dedicated to enhancing the lives of individuals and families affected by this condition worldwide. In 2022, they offered various services including peer support, education, outreach, advocacy, and research. Their peer support program included monthly Zoom meetings and 1:1 coaching sessions, while financial assistance and care packages were provided to those in need. The advocacy program hosted international meetings to discuss country-specific issues and collaborate on solutions, leading to a partnership with PFIC Italia for international financial assistance. Outreach and education initiatives launched Project REACH, a virtual workshop series in India and Pakistan, aiming to create an advocacy action plan and build relationships between patients and providers. The research program hosted a science-focused conference, relaunched the patient registry, and disbursed funding towards PFIC research. Their mission is to improve the lives of patients and families affected by PFIC, serving as a comprehensive support system.
Official website here: www.pfic.org
Is Progressive Familial Intrahepatic Cholestasis legitimate?
Progressive Familial Intrahepatic Cholestasis is a legitimate nonprofit organization registered as a 501(c)(3) entity. Progressive Familial Intrahepatic Cholestasis submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $71,000
Professional Fundraising Fees: $0
Other Salaries and Wages: $114,718
For more financial information, click here
Official website here: www.pfic.org
What is the mission statement of Progressive Familial Intrahepatic Cholestasis?
Progressive Familial Intrahepatic Cholestasis, or PFIC, has a mission to enhance the lives of individuals and families globally impacted by this condition. The organization aims to achieve this by offering various services such as peer support, education, outreach, advocacy, and research. Their peer support program includes monthly Zoom support groups and one-on-one sessions for additional assistance. Financial aid and care packages are provided to those in need within the PFIC community.
Advocacy efforts, like the International Alliance series, bring together international patient leaders to discuss and collaborate on shared solutions. PFIC Italia was recently partnered with to expand financial assistance to international recipients. Outreach, advocacy, and education initiatives, such as Project REACH, help create advocacy action plans in underserved countries, educate patients, and build relationships between patients and healthcare providers.
In 2022, PFIC Network hosted a science-focused conference and launched a patient registry on a new platform, both aimed at improving research and data collection. They also announced funding opportunities for PFIC research and began a translation project to offer the registry in multiple languages in 2023. This organization's primary focus is to continuously work towards improving the lives of those affected by PFIC worldwide.
Official website here: www.pfic.org
What is the revenue of Progressive Familial Intrahepatic Cholestasis?
Progressive Familial Intrahepatic Cholestasis's revenue in 2023 was $365,826.
Official website here: www.pfic.org
Who are the executives of Progressive Familial Intrahepatic Cholestasis and what are their salaries?
The average compensation at Progressive Familial Intrahepatic Cholestasis during 2023 was $46,430. There are 4 employees and 30 volunteers at Progressive Familial Intrahepatic Cholestasis.
Here are 6 key members and their salaries:
- Compensation: $71,000
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
Official website here: www.pfic.org
Where can I find the form 990 for Progressive Familial Intrahepatic Cholestasis?
Progressive Familial Intrahepatic Cholestasis's most recent form 990 was submitted in 2023 and can be accessed here.
Official website here: www.pfic.org
Learn more at the official website: www.pfic.org
Mission Statement of Progressive Familial Intrahepatic Cholestasis
Progressive Familial Intrahepatic Cholestasis, or PFIC, is an organization dedicated to improving the lives of patients and families worldwide affected by this condition. Their mission is centered around providing support, education, advocacy, and research to help those impacted by Progressive Familial Intrahepatic Cholestasis.
PFIC Network, as the organization is known, is committed to making a significant difference in the lives of patients and their families. They achieve this by offering various programs, including peer support, where they conduct monthly Zoom meetings led by a facilitator and provide 1:1 Zoom coaching sessions for families in need. Additionally, they offer financial assistance and care packages to PFIC patients and families in distress.
In terms of advocacy, PFIC Network hosts international meetings to gather patient leaders from around the world to discuss and collaborate on shared solutions. This led to a partnership with PFIC Italia to expand their financial assistance program to international recipients. Furthermore, they launched Project REACH, a virtual workshop series and needs assessment, to help create an advocacy action plan for local patient leaders in underserved countries like India and Pakistan.
In the realm of outreach and education, PFIC Network organized a science-focused conference, bringing together researchers, clinicians, industry stakeholders, patients, and families to discuss unmet needs and provide updates on ongoing PFIC research. They also relaunched their patient registry on a new platform, improving the quality of data collected and allowing for longitudinal data collection.
In summary, PFIC Network's mission is to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis. They achieve this through a variety of programs, including peer support, financial assistance, advocacy initiatives, and research projects, all aimed at providing support, education, and resources to those affected by this condition.
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Impact
October, 2024
Progressive Familial Intrahepatic Cholestasis (PFIC) significantly impacts the lives of affected individuals and their families, leading to a range of health challenges and emotional distress. PFIC is a genetic disorder characterized by a progressive impairment of bile flow from the liver, which can result in severe liver damage, cirrhosis, and ultimately liver failure if left untreated. Patients often experience debilitating symptoms like intense itching, jaundice, and growth retardation, which can affect their quality of life.
The impact of PFIC extends beyond physical health, as families face emotional and psychological challenges. The uncertainty of disease progression, the need for specialized medical care, and the social and financial burdens associated with treatments can create significant stress. Moreover, patients may feel isolated due to the rarity of the disease, lacking access to peer support and resources.
Efforts to address these challenges include providing peer support through dedicated programs, where families can connect and share experiences. Educational outreach helps to inform and empower patients and families, enabling them to navigate the complexities of PFIC more effectively. Advocacy initiatives aim to unite international patient leaders to discuss specific issues and collaborate on solutions, enhancing the collective voice for research and resources.
Research plays a critical role in improving outcomes for PFIC patients. Conferences connect researchers, clinicians, and families, fostering communication about unmet needs and ongoing studies. Enhanced patient registries are being established to gather valuable data, which will facilitate better understanding and treatment of PFIC.
In summary, the impact of Progressive Familial Intrahepatic Cholestasis is profound, affecting not just health but also the emotional and social well-being of patients and their families. Comprehensive support programs, advocacy efforts, and ongoing research are essential to improve the lives of those affected by this condition.
This information is meant to be a general summary of Progressive Familial Intrahepatic Cholestasis. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2023.
- Gross Receipts: $368,283
Assets and Liabilities:
- Total Assets: $487,255
- Total Liabilities: $50,829
- Net Assets: $436,426
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Organization Details
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