Hi There,
Accessia offers financial assistance to people with rare disorders. Here is a link to their application form. I think that there is currently a waitlist, but check to find out.
https://patient.accessiahealth.org/application/start
You may also want to try NORD
https://applications.rarediseases.org/Home/WebEnroll
Or The Assitance Fund:
https://enroll.tafcares.org/TAF_ProgramInformation?
I wish you all the best and let me know how it goes.