ARPKD/CHF Alliance
The ARPKD/CHF Alliance is only organization in the world solely committed to both Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis. Our mission is to educate, advocate, support, and advance research specifically for Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis. Our purpose is to improve the lives of those affected. Guidestar DOES NOT link to IRS 990-N tax information, visit our website for this information. See "About Us," then "Financial and Organizational Information."
ARPKD/CHF Alliance
The ARPKD/CHF Alliance is a non-profit organization in the United States, dedicated to providing support and resources for individuals and families affected by Autosomal Recessive Polyscystic Kidney Disease (ARPKD) and Congenital Hepatic Fibrosis (CHF). With an Employer Identification Number (EIN) of 233069557, the organization is recognized as a public charity.
Mission
The ARPKD/CHF Alliance is committed to a multifaceted mission:
- Education: Providing information about ARPKD and CHF to raise awareness and understanding among both the public and medical professionals.
- Advocacy: Advocating for the needs of individuals affected by these conditions, ensuring their voices are heard in healthcare and policy discussions.
- Support: Offering emotional and practical support to families dealing with the challenges of ARPKD and CHF.
- Research: Promoting and advancing research into these diseases, aiming to improve treatment options and quality of life for those affected.
Activities
The organization engages in various activities to fulfill its mission:
- Networking Opportunities: Facilitating connections between families and individuals affected by ARPKD and CHF, fostering a sense of community and shared support.
- Newsletters and Updates: Distributing newsletters to keep members informed about the latest research developments, support services, and community events.
- Community Engagement: Utilizing platforms such as social media groups to connect patients and families.
Conditions Addressed
ARPKD is a chronic and progressive disease characterized by the growth of numerous cysts in the kidneys, leading to eventual kidney failure. It is often accompanied by congenital hepatic fibrosis, a condition affecting the liver. These conditions can present significant health challenges, sometimes with life-threatening complications early in life. The ARPKD/CHF Alliance plays a crucial role in supporting those affected and advancing research towards better outcomes.
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