"Thanks for everything that you do!"
Parents know the heartache and difficulty of this disease. Our babies pass away, and for those who survive, this is a chronic, progressive disorder, which has no disease specific treatments. Certainly not enough is known; 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, 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.