[RBS] Pediatric hematologist?

[Goldstein]

The daughter of a friend in the US has an extremely rare blood disorder, and
her parents are researching their options.  They are willing to speak
with/meet appropriate professionals around the world, as there are only 12
known pediatric cases of this in the US, with my friend's daughter being the
youngest of them all.

Related - there is a Rav or 2 - or some medical laypeople - that I
understand know medical experts all over the world and might be able to help
point my friend in the right direction.  Anybody know who those people are?

Tizku l'mitzvot,

Avram Goldstein