Why You Should Support Us

Why you should support the ARPKD/CHF Alliance

What makes the ARPKD/CHF Alliance unique is that we are the only organization in the world 100% dedicated to both Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (the other half of our disease).

Putting patients first has always been the focus of the ARPKD/CHF Alliance, since our inception.  In 2001 this disease was considered HOPELESS; not even our diseased gene was known. Medical professionals routinely gave no hope for survival and little to no encouragement for any normalcy of life. But thought-provoking questions challenged the status quo, newsletters unified, and many “firsts” changed all that. The ARPKD/CHF Alliance generated the largest research study in the world for autosomal recessive polycystic kidney disease (ARPKD) and congenital hepatic fibrosis (CHF) and supported research that discovered the cause of CHF.

We created substantial, tangible contributions, and a tipping point for ARPKD and CHF understanding. Essentially we created impact for this disease.

Since inception we have provided patient advocacy (before this was a well known concept), which means our work has always been based on patient needs. Everything we do is on behalf of the patient. Now infants that were given up on, today survive and thrive. Children that had no hope, now plan for a future.

We dedicate thousands of volunteer working hours each and every year to improve patient outcomes. As a result, ARPKD/CHF is no longer considered a subset to a common disease, but an entity of its own. Others emulate our good work; this demonstrates our effectiveness.  What is more, our services have always been provided free to the community.

What we don’t have in our budget is much overhead. We don’t have a PR department that sings our praises or markets our effects, and we don’t pay anyone to fundraise.  Board Members have largely donated their time and absorbed many expenses through the years to serve this community.  We are supported entirely by donations, family fundraisers, and have relied on one annual end of year asking letter.  Remarkably, our modest annual operating budget is less than $25,000.  We are driven by passion and the desire to do more, and depend on donated space, and the good will of others who care. The bar for this disease has been raised significantly, and our future goals are only limited by financial support!  Now imagine what we could do if our operating budget rose considerably!

Supporting the only organization in the world solely committed to ARPKD and CHF makes perfect sense.  All donations are tax-deductible and can be made in honor or in memory of someone and receive a thank you letter.

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