Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
If NORD does not have a program for your disease, you may find one through another provider. View More>
Eligibility criteria can vary by program but most of NORD’s patient assistance programs require the following:
Maximum award levels vary by program. Awards are made for a calendar year, and patients may reapply for subsequent years. NORD is able to offer same day approval for programs.
To apply for assistance you first need to locate the program below by disease state. Then follow the related contact information. If you do not see a patient assistance program listed that meets your specific need, please contact us for more information at: 1-800-999-6673.
NORD’s Patient Services Representatives are available during the following hours:
Patients can contact NORD’s Patient Services Representatives at 1-800-999-6673 during the following hours:
Si deseas hablar con alguien en espanol por favor llame al (844) 259-7178 para asistencia.
Co-Pay Assistance Program
Contact: 1-844-251-7425
Email: ALL@rarediseases.org
Fax: 1-203-267-0847
Premium and Co-Pay Assistance Program
Contact:(855) 567-3721
Email: alpha-1@rarediseases.org
Fax:(203) 349-3192
Clinical Trial Travel & Lodging
Contact: (866) 647-9325
Email: PTC-028-ANI@rarediseases.org
Fax: (203) 674-9939
Premium Assistance
Co-Pay Assistance
Medical Assistance
Email: ahus@rarediseases.org
Phone: 203-616-4326
Fax: 203-405-0528
Clinical Trial Travel & Lodging – Study closed to new patients
Contact: (800) 999-6673
Email: autismspectrum@rarediseases.org
Fax: (203) 635-4172
Co-Pay assistance
Medical Assistance
Contact: 877-291-7805
Email: BileAcidSynthesis@rarediseases.org
Fax: 203-486-8803
Carnitor Medication Assistance Program
Contact: 855-653-3220
Email: carnitor@rarediseases.org
Fax: 203-349-3279
Co-Pay Assistance
Email: ctx@rarediseases.org
Fax: 1-203-517-0978
Co-Pay Assistance Program
Contact: 1-855-864-4024
Email: CervicalDystonia@rarediseases.org
Fax: 1-203-349-3003
Co-Pay Assistance
Contact: 1-855-864-4027
Email: chorea@rarediseases.org
Fax: 1-203-635-4243
Emergency Assistance Program
CoPay Program
Medical Assistance Program
Contact: 855-201-5096
Email: CGDassist@rarediseases.org
Fax: 203-486-8462
*learn more about this program*
Clinical Trial Travel & Lodging Assistance
Contact: (855) 864-4026
Email: cms@rarediseases.org
Fax: (203) 349-3278
Co-Pay Assistance
Premium Assistance
Conditions: Congenital Sucrase-Isomaltase Deficiency
Contact: 1-800-275-0589
Email: csid@rarediseases.org
Fax: 1-203-517-0978
Co-Pay Assistance
Contact: 1-855-567-3801
Email: caps@rarediseases.org
Fax: 1-203-349-3278
Medical Assistance
Co-Pay Assistance
Premium Assistance
Contact: 1-855-864-4018
Email: cushings@rarediseases.org
Fax: 1-203-517-0978
Photopheresis Therapy Medication Assistance
Contact: 877-241-7220
Email: photopheresis@rarediseases.org
Fax: 203-428-4472
Emergency Relief Program
Co-Pay Program
Medical Assistance Program
Contact: 855-201-5087
Email: cystinosis_assist@rarediseases.org
Fax: 203-486-8033
*learn more about this program*
Co-Pay Assistance
Medical Assistance
Contact: 866-218-7975
Email: cystinuria@rarediseases.org
Fax: 203-405-8778
Travel & Lodging Assistance
Feinstein Institute-DBA ACE-011 Study Travel & Lodging Assistance
Contact: 1-203-616-4327
Email: ace011-dba@rarediseases.org
Fax: 1-203-635-4163
TFP-DBA Study Travel & Lodging Assistance
Contact: 1-800-459-7599
Email: marauderTFP-DBA@rarediseases.org
Fax: 1-203-586-0134
Clincial Trial Travel & Lodging
Contact: 1-877-805-0411
Email: eap001@rarediseases.org
Fax: 1-203-274-8700
Clinical Trial Travel & Lodging: PTC 124-GD-016-DMD
Contact: 1-866-647-9325 x 333
Email: PTC-016-DMD@rarediseases.org
Fax: 1-203-674-9941
Clinical Trial Travel & Lodging: FG-3019
Contact: 1-844-876-0774
Email: fg-3019@rarediseases.org
Fax: 1-203-798-7413
Clinical Trial Travel & Lodging – Study closed to new patients
Contact: 1-855-316-4755
Email: ionis-CS12@rarediseases.org
Fax: 203-349-3206
Co-Pay Assistance
Contact: 1-855-567-3801
Email: caps@rarediseases.org
Fax: 1-203-349-3278
Co-Pay Assistance
Premium Assistance
Medical Assistance
Contact: 1-855-864-4019
Email: gaucherdiseases@rarediseases.org
Fax: 1-203-349-3189
Matulane Medication Assistance
Contact: 1-855-653-3220
Email: matulane@rarediseases.org
Fax: 1-203-349-3282
Co-Pay Assistance
Premium Assistance
Medical Assistance
Contact: 1-855-864-4021
Email: huntersyndrome@rarediseases.org
Fax: 1-203-349-3190
Co-Pay Assistance
Premium Assistance
Medical Assistance
Contact: 1-866-828-8902
Email: hpp@rarediseases.org
Fax: 1-203-349-8446
Medication Assistance
Contact: 1-877-279-2459
Email: vsl3ds@rarediseases.org
Fax: 1-203-349-8172
Ground Transportation
Contact: 1-877-291-7865
Email: INADTravel@rarediseases.org
*Click here for more information about this program*
Clinical Trial Travel & Lodging
Contact: 1-877-805-0411
Email: eap001@rarediseases.org
Fax: 1-203-274-8700
Premium & Copay Patient Assistance
Contact: 203-616-4308
Fax: 203-349-3198
Email: LEMS@rarediseases.org
*Click here for more information about this program*
Medical Assistance
Co-Pay Assistance
Premium Assistance
Contact: 1-844-675-2354
Email: MPS-IV-A@rarediseases.org
Fax: 1-203-349-3200
Co-Pay Assistance
Contact: 1-855-567-3801
Email: caps@rarediseases.org
Fax: 1-203-349-3278
Co-Pay Assistance
Premium Assistance
Medical Assistance
Contact: 1-877-798-8716
Email: mps-vi@rarediseases.org
Fax: 1-203-349-3203
Copay Assistance
Premium Assistance
Contact: 855-202-5826
Email: narcolepsy@rarediseases.org
Fax: 203-405-8795
Co-Pay Assistance
Contact: 1-855-567-3801
Email: caps@rarediseases.org
Fax: 1-203-349-3278
Co-Pay Assistance
Premium Assistance
Medical Assistance
Contact: 1-855-567-3814
Email: pnh@rarediseases.org
Fax: 1-203-517-4297
Co-Pay Assistance
Premium Assistance
Medical Assistance
Contact: 877-291-7756
Email: PeriodicParalysis@rarediseases.org
Fax: 203-586-0138
Co-Pay Assistance
Premium Assistance
Medical Assistance
Contact: 1-855-628-0646
Email: pku@rarediseases.org
Fax: 1-203-798-2964
Clinical Trial Travel & Lodging
Contact: 1-800-634-7207
Email: BCH-PTEN@rarediseases.org
Fax: 203-635-4095
*learn more about this program*
Clinical Trial Travel & Lodging
Contact: 203-616-4324
Email: PDCDtravel@rarediseases.org
Fax: 203-263-9928
Caregiver Respite
Contact: 203-616-4328
Email: CaregiverRespite@rarediseases.org
*learn more about this program*
Co-Pay Assistance
Contact: 1-855-864-4028
Email: Lgsseizures@rarediseases.org
Fax: 1-203-614-1713
Co-Pay Assistance
Contact: 1-855-218-9877
Email: sbs@rarediseases.org
Fax: 1-203-405-0802
Clinical Trial Travel & Lodging: CS12 SMNRX | Program Closed
Contact: 1-855-316-4755
Email: ionis-CS12@rarediseases.org
Fax: 1-203-349-3208
Clinical Trial Travel & Lodging: CS3A SMNRX | Program Closed
Contact: 1-855-316-4755
Email: ionis-CS3A@rarediseases.org
Fax: 1-203-349-3208
Premium assistance
Copay assistance
Medical assistance
Contact: 877-291-7792
Email: tardivedyskinesia@rarediseases.org
Fax: 203-405-0825
Travel & Lodging Assistance
Contact: 203-616-4320
Email: TSCTravel@rarediseases.org
Medication Assistance
Contact: 1-877-279-2459
Email: vsl3ds@rarediseases.org
Fax: 1-203-349-8172
Co-Pay Assistance
Emergency Relief Program
Medical Assistance
Medical Foods and Supplements
Contact: 1-877-333-1860
Email: UCD@rarediseases.org
Fax: 1-203-405-0802
*learn more about this program*
*aprender más sobre este programa*
Urea Cycle Disorders Diagnostic Testing
Phone: 877-333-1860
Fax: 203-405-0802
Email: ucd@rarediseases.org
*learn more about this program here*
Co-Pay Assistance
Medical Assistance
Contact: 877-291-7805
Email: BileAcidSynthesis@rarediseases.org
Fax number: 203-486-8803
This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous gift that demands significant amounts of time, attention, patience and dedication.
The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify.
What care may be covered?
Who is eligible?
The caregiver must be a US citizen or permanent resident of the United States for at least six months with evidence of residency, and be willing to undergo a financial evaluation of need to determine if they fall within the program’s financial eligibility guidelines. Additionally, the patient for whom care is being provided must have a confirmed rare disease diagnosis.
How do you apply?
Awards are granted on a first come, first served basis to eligible individuals. There is no fee to apply. Contact a Patient Services Representative at 203.616.4328 or email CaregiverRespite@rarediseases.org.
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Support this program and make a positive impact on families throughout the rare community. Contact us at orphan@rarediseases.org to make a donation to sustain the Rare Caregiver Respite Program.
