Hearts Beating ARPKD/CHF
Parents know the heartache and difficulty of this disease. Babies born with ARPKD/CHF can't speak for themselves and those who survive the newborn period have a chronic, progressive disorder that creates many unknowns. Our babies pass away and there are no treatments or medical care. Certainly not enough is known and we need better understanding for adequate care. Parents and those directly affected want to do everything they can to improve outcomes and normalcy of life, to make a difference for all those affected.
Disease specific research is important when ANY child is affected, but being a rare disease shouldn't hinder treatments or outcomes!
Every parent of an ARPKD/CHF child hopes for a better future...and why shouldn't we? We have great hopes and aspirations for our children.
The ARPKD/CHF Alliance continuously strives to push for better understanding and continuously improve patient outcomes, because that is what we do; our purpose is to improve the lives of those affected, from prenatal diagnosis to post-transplant, with research, education, advocacy, and support.
There is no limit to what we can do as a patient advocacy organization! See what we have accomplished, including milestones, and where we are going.
Walk/Run/or Cycle on behalf of ARPKD/CHF.
1. Click the GET STARTED button.
2. Create your own personalized page with a theme/title, your story, and a photo, it takes minutes. This has team capabilities and includes "Faces of ARPKD/CHF" video.
3. Email and invite others to participate, family, friends, and colleagues--ask for their support, and watch comments and progress.