Two and a half decades. One community.
The story of the ARPKD/CHF Alliance is the story of families refusing to let their children be forgotten by research and policy.
- 2001
Founded by Families
The ARPKD/CHF Alliance is founded by parents of affected children seeking community, research, and answers.
- 2002
First Online Resources, Registry & Gathering
Established the first accurate internet information — including prenatal, diagnosis, and bereavement resources — and a patient registry with Institutional Review Board protections. Presented the ARPKD/CHF database at the NIH PKD Strategic Planning Meeting, requested that ARPKD/CHF be added to the ADPKD CRISP studies, and held the first social gathering of ARPKD/CHF families at Spring Gulch Camp Resort in Pennsylvania.
- 2003
NIH Natural History Study Launched
Generated the largest research study in the world specific to ARPKD/CHF — “Clinical Investigations into Autosomal-Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis” — at the NIH in Bethesda, Maryland. This was the first time the disease was comprehensively and prospectively evaluated.
- 2004
Added to NIH's Liver Action Plan
Petitioned for Congenital Hepatic Fibrosis to be added to the NIH Liver Action Plan, helping shape future research direction.
- 2005
First ARPKD/CHF Medical Symposium & CHF Research Grant
Co-sponsored the first ARPKD/CHF Medical Symposium, in which clinicians and researchers determined that “liver disease is significant in ARPKD” — leading the Alliance to fund a $50,000 research grant for Congenital Hepatic Fibrosis.
- 2006
Clinical Care Considerations & National Symposium Report
Created Access to Care documents and Clinical Care Considerations for informed, individualized decision-making, and developed the Professional Educational Project (PEP) to replace antiquated information that often left families with little or no hope. The Alliance also helped sponsor a 1.5-day NIH symposium (NIH Office of Rare Diseases and NHGRI) on the present status and future of ARPKD/CHF research — resulting in a published summary statement that changed the direction of the field.
Read the NIH / Office of Rare Diseases summary statement → - 2007
New Website & Regional Support
Built an extensive new website as a go-to place for information and help, and developed regional support.
- 2008
First Family Conference
Held the first family conference specific to the disease.
View the 2008 Conference → - 2009
Research Breakthrough
The fibroblast cell responsible for CHF is identified through research supported by the ARPKD/CHF Alliance.
- 2010
Research Papers Published
Research papers published from the Natural History Study established for the first time that kidney size does not correlate with kidney function in ARPKD — the opposite of ADPKD, as determined by the ADPKD CRISP studies.
- 2011
Supported PKD Research Meeting
Supported a PKD meeting hosted by the Federation of American Societies for Experimental Biology (FASEB).
- 2012
NDRI Partnership & Family Gathering
Partnered with the National Disease Research Interchange (NDRI) to support research, and participated in the Midwest Family Gathering Family Fun Day in Kenosha, Wisconsin.
See photos from the Midwest Family Gathering → - 2013
Patient Registry & Policy Advocacy
Created the ARPKD/CHF Alliance Patient Registry within the NIH Global Rare Diseases Patient Registry and Data Repository (GRDR) and Office of Rare Diseases Research (ORDR); advocated for policy changes at the United Network for Organ Sharing (UNOS) for CHF organ allocation; and generated interest for a Consensus Medical Management meeting for ARPKD/CHF.
- 2014
Quality of Life Research & Advocacy
Represented ARPKD/CHF at the Drug Information Association’s 50th Annual Meeting — one of the largest pharmaceutical meetings in the world — participated in the NIH’s NCATS Global Rare Diseases Patient Registry Data Repository, and created the first ARPKD/CHF Quality of Life research.
- 2015
Advocacy Training & West Coast Gathering
Coordinated Advocacy Training to cultivate future patient advocates and leaders, and held A Friends and Family West Coast ARPKD/CHF Gathering.
About the West Coast Gathering → - 2016
A Transformed Outlook
With continued drive — and advancements in prenatal sonogram technology, neonatal care, and genetic medicine — the outlook for children diagnosed has been completely transformed. The disease is no longer considered uniformly fatal, and the vast majority of those affected now survive well into adulthood.
- 2017
Conference at Children's Hospital of Wisconsin
Held an educational conference for patients and families living with polycystic kidney disease at Children's Hospital of Wisconsin, coordinated by Linda Bevec.
View the 2017 Conference → - 2018
Family Conference & First Board Meeting
Held a family conference; held the first face-to-face Board Meeting; and represented ARPKD/CHF at NORD’s 2018 Rare Diseases and Orphan Products Breakthrough Summit.
View the 2018 Conference → - 2019
PCORI Ambassador Program
Participated in the PCORI Ambassador Program and represented ARPKD/CHF at its Annual Meeting.
- 2020
Virtual Conference & PCORI
Held a virtual ARPKD/CHF conference connecting families and clinicians, and represented ARPKD/CHF at PCORI’s Annual Conference.
View the 2020 Conference → - 2021
Care About Rare Campaign
The Care About Rare virtual Walk/Run/Bike campaign launches as a community-wide event.
- 2022
RARE Health Equity Summit
Attended the RARE Health Equity Summit to represent ARPKD/CHF.
- 2023
PCORI Annual Meeting
Represented ARPKD/CHF at the PCORI Annual Meeting.
- 2024
RARE Drug Development Symposium
Participated in the RARE Drug Development Symposium.
- 2026
Two and a Half Decades, One Community
Twenty-five years of family support, advocacy, and research progress — from 2001 to 2026.