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.

Acid Sphingomyelinase Deficiency (ASMD) Medical Assistance

Accepting Applications

Phone: 860-453-6434 Email: [email protected] Fax: 203-266-1026

Resource(s): ASMD PremiumCopay&MedicalAssistanceAug2024

Acid Sphingomyelinase Deficiency (ASMD) Premium Copay

Accepting Applications

Phone: 860-453-6434 Email: [email protected] Fax: 203-266-1026

Resource(s): ASMD PremiumCopay&MedicalAssistanceAug2024

Alpha-1 Antitrypsin Deficiency Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-567-3721 Email: [email protected] Fax: 203-349-3192

Resource(s): Alpha-1 PremiumCopayAssistance-July2024

Amyloidosis Medical Assistance

Temporarily Waitlisting

Phone: 203-616-4325 Email: [email protected] Fax: 203-267-0847

Resource(s): PAP_Amyloidosis

Amyloidosis Premium Copay Assistance

Temporarily Waitlisting

Phone: 203-616-4325 Email: [email protected] Fax: 203-267-0847

Resource(s): PAP_Amyloidosis

Amyotrophic Lateral Sclerosis (ALS) Travel & Lodging Assistance

Accepting Applications

Phone: 203-794-6992 Email: [email protected] Fax: 203-702-4215

Resource(s): ALS T&L Assistance

AT-01 Phase 3 Imaging Study

Referral Required

Phone: 475-365-6400 Email: [email protected] Fax: 475-470-8977

Resource(s): AT01-301 Phase 3 Imaging Agent Study_flyer 12_04_24

atypical Hemolytic Uremic Syndrome (aHUS) Emergency Relief

Accepting Applications

Phone: 203-616-4326 Email: [email protected] Fax: 203-405-0528

atypical Hemolytic Uremic Syndrome (aHUS) Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-616-4326 Email: [email protected] Fax: 203-405-0528

Resource(s): aHUS_PremiumCopay&MedicalAssistance-July2024

atypical Hemolytic Uremic Syndrome (aHUS) Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-616-4326 Email: [email protected] Fax: 203-405-0528

Resource(s): aHUS_PremiumCopay&MedicalAssistance-July2024

Azitra NTH-1201 Study Travel Assistance

Referral Required

Phone: 203-763-1085 Email: [email protected] Fax: 203-702-4227

Resource(s): NTH-1201 (NethertonSyndrome) -Azitra-June2024

Bardet-Biedl Syndrome (BBS) Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-309-6751 Email: [email protected] Fax: 203-648-4881

Resource(s): PAP_PremCopay_BBS flyer, PAP_PremCopay_BBS-flyer SPANISH

Barth Syndrome Emergency Relief

Accepting Applications

Phone: 203-292-0293 Email: [email protected] Fax: 475-206-0898

Resource(s): BarthSyndrome ERF Revised -3-2023

Barth Syndrome Travel Assistance Fund

Referral Required

Phone: 203-242-0497 Email: [email protected] Fax: 203-516-2398

Resource(s): Barth Syndrome Foundation Family Services Fund

Batten Disease Emergency Relief

Not yet accepting applications for current year

Phone: 203-405-0585 Email: [email protected] Fax: 203-349-3836

Resource(s): BattenDisease-ERF

Batten Disease Medical Assistance

Accepting Applications

Phone: 203-405-0585 Email: [email protected] Fax: 203-349-3836

Resource(s): Batten-PremiumCopayMedicalAssist-2026 (2)

Batten Disease Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-405-0585 Email: [email protected] Fax: 203-349-3836

Resource(s): Batten-PremiumCopayMedicalAssist-2026 (2)

Bile Acid Synthesis and Zellweger Spectrum Disorders Medical Assist

Accepting new applications and re-enrollments for current year

Phone: 877-291-7805 Email: [email protected] Fax: 203-486-8803

Resource(s): BASD_ZSD-PremiumCopay&MedicalAssistance

Bile Acid Synthesis and Zellweger Spectrum Disorders Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 877-291-7805 Email: [email protected] Fax: 203-486-8803

Resource(s): BASD_ZSD-PremiumCopay&MedicalAssistance

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-635-2644 Email: [email protected] Fax: 203-405-8178

Resource(s): PAP_Copay_BPDCN (1)

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Emergency Relief

Accepting Applications

Phone: 203-635-2644 Email: [email protected] Fax: 203-405-8178

Resource(s): BPDCN-PAP-FAQ-10-2020

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Travel & Lodging Assistance

Accepting Applications

Phone: 203-616-4329 Email: [email protected] Fax: 203-267-9529

Resource(s): BPDCN-PAP-FAQ-10-2020

Cerebrotendinous Xanthomatosis (CTX) Medical Assistance

Accepting Applications

Phone: 800-999-6673 Email: [email protected] Fax: 203-349-8431

Resource(s): CTX-PremCopay&Medical Assist-2026

Cerebrotendinous Xanthomatosis (CTX) Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 800-999-6673 Email: [email protected] Fax: 203-349-8431

Resource(s): CTX-PremCopay&Medical Assist-2026

Chronic Granulomatous Disease (CGD) Copay Assistance

Temporarily Waitlisting

Phone: 855-201-5096 Email: [email protected] Fax: 203-486-8462

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

Chronic Granulomatous Disease (CGD) Medical Assistance

Temporarily Waitlisting

Phone: 855-201-5096 Email: [email protected] Fax: 203-486-8462

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

Chronic inflammatory demyelinating polyneuropathy (CIDP) Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-267-9005 Email: [email protected] Fax: 203-266-1002

Resource(s): CIDP-PremiumCopay&MedicalAssistance-Jan.2025 (4)

Chronic inflammatory demyelinating polyneuropathy (CIDP) Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-267-9005 Email: [email protected] Fax: 203-266-1002

Resource(s): CIDP-PremiumCopay&MedicalAssistance-Jan.2025 (4)

Classical Homocystinuria (HCU) Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-616-4327 Email: [email protected] Fax: 203-635-4163

Resource(s): MedicalAssist_Classical HCU-2026 (6)

CureDuchenne Educational T&L Support

Closed

Phone: 203-408-2006 Email: [email protected] Fax: 203-516-9841

Resource(s): CureDuchenne Educational Support T&L, CureDuchenne Educational Support T&L- Spanish

Cushings Syndrome Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-864-4018 Email: [email protected] Fax: 203-517-0978

Resource(s): Cushing's-PremCopay&Medical Assist-Aug2024

Cushings Syndrome Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-864-4018 Email: [email protected] Fax: 203-517-0978

Resource(s): Cushing's-PremCopay&Medical Assist-Aug2024

Cystinosis Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-201-5087 Email: [email protected] Fax: 203-486-8033

Resource(s): Cystinosis-Copay&MedicalAssistance-Aug2024

Cystinosis Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 855-201-5087 Email: [email protected] Fax: 203-486-8033

Resource(s): Cystinosis-Copay&MedicalAssistance-Aug2024

Cystinuria Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 866-218-7975 Email: [email protected] Fax: 203-405-8778

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

Cystinuria Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 866-218-7975 Email: [email protected] Fax: 203-405-8778

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

DISC-1459 Erythropoietic Protoporphyria (EPP) Study Travel & Lodging Assistance

Referral Required

Phone: 203-263-9188 Email: [email protected] Fax: 203-621-3238

Duchenne Muscular Dystrophy Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 866-218-8172 Email: [email protected] Fax: 203-263-9597

Resource(s): DMD-PremiumCopay&MedicalAssistanceAugust2024, DMD-PremiumCopay&MedicalAssistance-Spanish (1)

Duchenne Muscular Dystrophy Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 866-218-8172 Email: [email protected] Fax: 203-263-9597

Resource(s): DMD-PremiumCopay&MedicalAssistanceAugust2024, DMD-PremiumCopay&MedicalAssistance-Spanish (1)

Eva’s Butterfly Wishes Experience for Rare Children (5 and under)

Accepting Applications

Phone: 877-291-7813 Email: [email protected] Fax: 203-486-8130

Resource(s): Eva's Butterfly Wishes-2025

Fabry Disease Medical Assistance

Temporarily Waitlisting

Phone: 203-433-2455 Email: [email protected] Fax: 203-643-2020

Resource(s): Fabry_PremiumCopay&MedicalAssistanceJuly2024

Fabry Disease Premium Copay Assistance

Temporarily Waitlisting

Phone: 203-433-2455 Email: [email protected] Fax: 203-643-2020

Resource(s): Fabry_PremiumCopay&MedicalAssistanceJuly2024

Floxuridine Medication Assistance

Accepting Applications

Phone: 203-516-0962 Email: [email protected] Fax: 203-207-9896

Resource(s): Floxuridine-Medication Assistance 2025 (1)

Gaucher Disease Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-296-3486 Email: [email protected] Fax: 203-349-3189

Resource(s): Gaucher-PremCopay&Medical Assist-March2025

Gaucher Disease Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-296-3486 Email: [email protected] Fax: 203-349-3189

Resource(s): Gaucher-PremCopay&Medical Assist-March2025

Guillain-Barre Emergency Relief Assistance

Accepting Applications

Phone: 203-309-3896 Email: [email protected] Fax: 203-740-1862

Resource(s): PAP_EmergRelief_GBS-July2024

Hunter Syndrome Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-694-0412 Email: [email protected] Fax: 203-349-3190

Resource(s): HunterSyndrome-PremiumCopay&MedicalAssistanceAug2024 (1)

Hunter Syndrome Premium Copay Assistance

Accepting new applications and re-enrollments for current year

Phone: 203-694-0412 Email: [email protected] Fax: 203-349-3190

Resource(s): HunterSyndrome-PremiumCopay&MedicalAssistanceAug2024 (1)

Hypophosphatasia (HPP) Emergency Relief

Accepting Applications

Phone: 866-828-8902 Email: [email protected] Fax: 203-349-8446

Hypophosphatasia (HPP) Medical Assistance

Accepting new applications and re-enrollments for current year

Phone: 866-828-8902 Email: [email protected] Fax: 203-349-8446

Resource(s): PremiumCopay&MedicalAssistance -HPP-July2024