NORD is a non-profit organization. This is from their website.
"We provide patient assistance programs to help individuals living with rare diseases:
Obtain medication
Receive financial help with insurance premiums and co-pays
Get diagnostic testing assistance
Receive travel assistance for clinical trials or consultation with disease specialists
Provide caregiver respite
Offer support during emergencies
Gain knowledge about rare diseases
Connect with other patient assistance programs"
I haven't applied yet myself. There are probably income qualifications but if you are in need of help this looks like a great resource. My understanding is that they will provide up to $20,000 in financial aid.