ORPHANET. First port of call for current information on MPNs and other rare diseases

[Rachelthepotter]

This is the site that was set up in 2017 ti coordinate info and research abt rare diseases and orphan drugs. It also lists the experts for each condition. MPNs are in there

orpha.net/consor/cgi-bin/in...

“Patients with rare diseases are numerous “. Nice strap line.

Rachel

[Copurnicus]

Wow, USA is not included

[Rachelthepotter in reply to Copurnicus]

You’re right: no USA centres of excellence listed yet It’s an EU initiative, but Canada and other non EU countries are there in the drop down list of countries. Maybe other countries will join in later.