Cents to Make Sense of a Rare Disease

My sisters have been diagnosed with Mast Cell Activation Syndrome (MCAS).  This is a condition that is not well understood by many, and their symptoms are considered to be severe.  They have both also been diagnosed with Ehlers-Danlos Syndrome Hypermobility Type.  There are only a handful of specialists who diagnose and treat MCAS in the world.  The specialist who has been treating them for the past 2 1/2 years has recently moved to Minnesota, and this will greatly increase the expense of seeing him, but the visits are necessary in order for him to continue advising the local specialists.  There are many other out of pocket expenses such as compounded and over the counter meds.  We appreciate your prayers!