RareCare^®

NORD’s Patient Assistance Programs

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.

IWMF (Waldenstrom Macroglobulinemia) Travel and Lodging Assistance

Accepting Applications

Phone: 203-308-5902 Email: [email protected] Fax: 203-293-9613

Resource(s): IWMF T&L-revised-July2024

Lambert-Eaton Myasthenic Syndrome (LEMS) Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-616-4308 Email: [email protected] Fax: 203-349-3198

Resource(s): LEMS-PremCopay-Aug2024

Lennox-Gastaut syndrome (LGS) Premium Copay Assist

Accepting new applications and re-enrollments for next year

Phone: 855-864-4028 Email: [email protected] Fax: 203-614-1713

Morquio A Emergency Relief

Accepting Applications

Phone: 844-675-2354 Email: [email protected] Fax: 203-349-3200

Morquio A Syndrome Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 844-675-2354 Email: [email protected] Fax: 203-349-3200

Resource(s): MorquioA_PremiumCopay&MedicalAssistanceJuly2024 (2)

Morquio A Syndrome Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 844-675-2354 Email: [email protected] Fax: 203-349-3200

Resource(s): MorquioA_PremiumCopay&MedicalAssistanceJuly2024 (2)

Mucopolysaccharidosis type VI (MPS VI) Emergency Relief

Accepting Applications

Phone: 877-798-8716 Email: [email protected] Fax: 203-349-3203

Mucopolysaccharidosis type VI (MPS VI) Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 877-798-8716 Email: [email protected] Fax: 203-349-3203

Resource(s): MPS-VI_PremiumCopay&MedicalAssistanceJuly2024 (1)

Mucopolysaccharidosis type VI (MPS VI) Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 877-798-8716 Email: [email protected] Fax: 203-349-3203

Resource(s): MPS-VI_PremiumCopay&MedicalAssistanceJuly2024

Multifocal Motor Neuropathy (MMN) Medical Assistance Program

Accepting new applications and re-enrollments for next year

Phone: 203-263-9484 Email: [email protected] Fax: 203-302-4695

Resource(s): PAP_Multifocal motor neuropathy (MMN)

Multifocal Motor Neuropathy (MMN) Premium Copay Program

Accepting new applications and re-enrollments for next year

Phone: 203-263-9484 Email: [email protected] Fax: 203-302-4695

Resource(s): PAP_Multifocal motor neuropathy (MMN)

Myasthenia Gravis Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 860-498-4307 Email: [email protected] Fax: 203-571-3167

Resource(s): MG-PremCopay&Medical Assist-Sept2024

Myasthenia Gravis Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 860-498-4307 Email: [email protected] Fax: 203-571-3167

Resource(s): MG-PremCopay&Medical Assist-Sept2024

Narcolepsy Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 855-202-5826 Email: [email protected] Fax: 203-405-8795

Resource(s): Narcolepsy-PremiumCopayAssistance-Aug2024

Neurofibromatosis Type 1 (NF1) Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-263-9795 Email: [email protected] Fax: 203-405-3021

Resource(s): NF1-PremCopay&Medical Assist-Aug2024

Neuromyelitis Optica Spectrum Disorder (NMOSD) Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-202-8833 Email: [email protected] Fax: 203-267-0550

Resource(s): NMOSD-PremCopay&Medical Assist-Aug2024

Neuromyelitis Optica Spectrum Disorder (NMOSD) Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-202-8833 Email: [email protected] Fax: 203-267-0550

Resource(s): PAP_PremCopay_NMOSD_Spanish

Neurotrophic Keratitis Copay Assistance

Accepting new applications for current year

Phone: 855-567-3680 Email: [email protected] Fax: 203-349-3188

Resource(s): PAP_Copay_NK-July2024

Organic Acidemia Copay Assistance

Accepting Applications

Phone: 203-285-8288 Email: [email protected] Fax: 203-702-4225

Resource(s): Organic Acidemia Assistance Program Flyer

Organic Acidemia Medical Assistance

Accepting Applications

Phone: 203-285-8288 Email: [email protected] Fax: 203-702-4225

Resource(s): Organic Acidemia Assistance Program Flyer

Paroxysmal Nocturnal Hemoglobinuria (PNH) Medical Assistance

Temporarily Waitlisting

Phone: 855-567-3814 Email: [email protected] Fax: 203-517-4297

Resource(s): PNH-PAP

Paroxysmal Nocturnal Hemoglobinuria (PNH) Emergency Relief

Accepting Applications

Phone: 855-567-3814 Email: [email protected] Fax: 203-517-4297

Paroxysmal Nocturnal Hemoglobinuria (PNH) Premium Copay Assistance

Temporarily Waitlisting

Phone: 855-567-3814 Email: [email protected] Fax: 203-517-4297

Resource(s): PNH-PAP

Periodic Paralysis Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 877-291-7756 Email: [email protected] Fax: 203-586-0138

Periodic Paralysis Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 877-291-7756 Email: [email protected] Fax: 203-586-0138

Phenylketonuria (PKU) Emergency Relief

Accepting Applications

Phone: 855-628-0646 Email: [email protected] Fax: 203-798-2964

Phenylketonuria (PKU) Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 855-628-0646 Email: [email protected] Fax: 203-798-2964

Resource(s): PKU_PremiumCopay&MedicalAssistance-Aug2024

Phenylketonuria (PKU) Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 855-628-0646 Email: [email protected] Fax: 203-798-2964

Resource(s): PKU_PremiumCopay&MedicalAssistance-Aug2024

Progeria & Progeroid Laminopathies Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-763-4717 Email: [email protected] Fax: 475-557-5183

Resource(s): PAP_Copay.Progeria-ProgeroidLaminopathies

Progeria & Progeroid Laminopathies Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-763-4717 Email: [email protected] Fax: 475-557-5183

Resource(s): PAP_MedicalAssist_Progeria&ProgeroidLaminopathies

PTC 124 GD-016-DMD Travel & Lodging Assistance (Duchenne Muscular Dystrophy)

Referral Required

Phone: 866-647-9325 Email: [email protected] Fax: 203-674-9937

PTC 743-NEU-005-FA Study Travel & Lodging Assistance(Friedreich’s Ataxia)

Referral Required

Phone: 203-989-0049 Email: [email protected] Fax: 203-571-4493

Rare Caregiver Respite

Accepting Applications

Phone: 203-616-4328 Email: [email protected] Fax: 203-405-0321

Resource(s): Respite Care 2023

Rare Disease Education Support Travel & Lodging Assistance

Temporarily Waitlisting

Phone: 860-556-2208 Email: [email protected] Fax: 203-635-7486

Rare Pediatric GI Medical Assistance

Temporarily Waitlisting

Phone: 203-896-7261 Email: [email protected] Fax: 203-635-2130

Resource(s): Medical Assist_RarePedGI

Rett Syndrome Emergency Relief Assistance

Accepting Applications

Phone: 203-544-2663 Email: [email protected] Fax: 475-206-0804

Resource(s): PAP_EmergRelief_Rett Syndrome (1)

Saol Pyruvate Dehydrogenase Deficiency Complex (PDCD) Travel & Lodging Assistance

Referral Required

Phone: 203-616-4324 Email: [email protected] Fax: 203-263-9928

Short Bowel Syndrome Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 855-218-9877 Email: [email protected] Fax: 203-429-8717

Resource(s): SBS-PremiumCopayAssistance-August2024

Thyroid Eye Disease Emergency Relief

Temporarily Waitlisting

Phone: 203-275-0972 Email: [email protected] Fax: 203-267-0386

Resource(s): TED-ERF

Tuberous Sclerosis Complex (TSC) Bcureful Center of Excellence Travel & Lodging Assistance

Accepting Applications

Phone: 203-616-4320 Email: [email protected] Fax: 203-349-3199

Resource(s): TSC Bcureful ClinicalCentersofExcellence rev.7-2023 (4)

Tuberous Sclerosis Complex (TSC) Bcureful Research Study Participation Travel & Lodging Assistance

Referral Required

Phone: 203-616-4320 Email: [email protected] Fax: 203-349-3199

Resource(s): TSC-Bcureful-ResearchStudyParticipation Travel Assistance (2)

Undiagnosed Disease Medical Assistance

Referral Required

Phone: 844-858-0451 Email: [email protected] Fax: 203-798-2289

Resource(s): FAQ Undiagnosed Patient Assistance Program 4-2019

Undiagnosed Diseases Copay Assistance

Referral Required

Phone: 844-858-0451 Email: [email protected] Fax: 203-798-2289

Resource(s): FAQ Undiagnosed Patient Assistance Program 4-2019

Urea Cycle Disorder Copay Assistance

Temporarily Waitlisting

Phone: 877-333-1860 Email: [email protected] Fax: 203-405-0802

Resource(s): UCD-PAP, UCD-PAP-Spanish

Urea Cycle Disorder Emergency Relief

Temporarily Waitlisting

Phone: 855-201-5139 Email: [email protected] Fax: 203-486-8023

Resource(s): UCD-PAP, UCD-PAP-Spanish

Urea Cycle Disorder Medical Assistance

Temporarily Waitlisting

Phone: 877-333-1860 Email: [email protected] Fax: 203-405-0802

Resource(s): UCD-PAP, UCD-PAP-Spanish