NORD: Cystinosis (Medical Assistance)

Funded
About
The NORD: Cystinosis (Medical Assistance) program offers crucial support for individuals diagnosed with Cystinosis, providing financial aid for medical expenses. While it does not cover medication costs directly, the program supports associated medical expenses such as laboratory testing and wound care. Through the use of drugs like Procysbi, Cystaran, Cystagon, Cyclophosphamide, and Cystadrops, NORD provides a lifeline to patients by making healthcare more accessible and affordable.
Insurance requirements: Underinsured, Uninsured
Enrollment Forms
Enrollment Form
Program Requirements
•Valid only for residents in the US and Puerto Rico
•Enrollment Required: Yes
•Coverage Required: No
•Needs Based: Yes
•Activation Required: No
Program Details
•Please note the following:
•1. Program offers medical expense assistance only (i.e. laboratory & diagnostic testing, wound care products and other specific medical expenses); medication costs are not covered
•2. Specific drug coverage is not indicated on program website; drug coverage must be verified by calling program
•3. Specialty Pharmacy representatives/case managers can send new referrals through the referral portal (https://rareaccess.org/#/login). Representatives must be preregistered by sending a request to RareAccess@rarediseases.org. Representatives can also email the program email address. To make the problem resolution quicker and more efficient please do not send messages to individual emails. If the matter is URGENT, please reach out to SP account manager for NORD to escalate the issue
•Patients may apply online, call (8552015087) or email (cystinosis_assist@rarediseases.org) program to enroll
•Awards are made for a calendar year, and patients may reapply for subsequent years
•NORD is able to offer same day approval for programs
•Patients must undergo a financial evaluation of need, and provide HIPPA authorization and accept a waiver of liability
•Fax number for program is 2034868033