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.

Acute Lymphocytic Leukemia Premium Copay Assistance

Temporarily Waitlisting

Phone: 844-251-7425 Email: ALL@rarediseases.org Fax: 203-267-0847

Related Rare Diseases: Acute Myeloid Leukemia, Large Granular Lymphocyte Leukemia

Alpha-1 Antitrypsin Deficiency Premium Copay Assistance

Temporarily Waitlisting

Phone: 855-567-3721 Email: alpha-1@rarediseases.org Fax: 203-349-3192

Related Rare Diseases: Alpha-1 Antitrypsin Deficiency, PCSK1 Deficiency, Tetrahydrobiopterin Deficiency, ...

AT-01 Imaging Study Travel Assistance

Referral Required

Phone: 203-242-0497 Email: at01@rarediseases.org Fax: 475-470-8977

Related Rare Diseases: Amyloidosis, Tumor Necrosis Factor Receptor-Associated Periodic Syndrome

AT-05 Study Travel Assistance

Referral Required

Phone: 203-701-7934 Email: AT05@rarediseases.org Fax: 203-266-1046

Related Rare Diseases: Amyloidosis, Tumor Necrosis Factor Receptor-Associated Periodic Syndrome

Resource(s): Attralus-AT-05_CTTL-flyer

atypical Hemolytic Uremic Syndrome (aHUS) Emergency Relief

Accepting Applications

Phone: 203-616-4326 Email: ahus@rarediseases.org Fax: 203-405-0528

Related Rare Diseases: Atypical Hemolytic Uremic Syndrome, STEC Hemolytic Uremic Syndrome

atypical Hemolytic Uremic Syndrome (aHUS) Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-616-4326 Email: ahus@rarediseases.org Fax: 203-405-0528

Related Rare Diseases: Atypical Hemolytic Uremic Syndrome, STEC Hemolytic Uremic Syndrome

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

atypical Hemolytic Uremic Syndrome (aHUS) Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-616-4326 Email: ahus@rarediseases.org Fax: 203-405-0528

Related Rare Diseases: Atypical Hemolytic Uremic Syndrome, STEC Hemolytic Uremic Syndrome

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

Bardet-Biedl Syndrome (BBS) Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-309-6751 Email: BBS@rarediseases.org Fax: 203-648-4881

Related Rare Diseases: Bardet-Biedl Syndrome, Síndrome de Bardet-Biedl

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

Barth Syndrome Emergency Relief

Accepting Applications

Phone: 203-292-0293 Email: barthsyndrome_assist@rarediseases.org Fax: 475-206-0898

Related Rare Diseases: Barth Syndrome, Froelich Syndrome, Leukocyte Adhesion Deficiency Syndromes ...

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

Batten Disease CLN5 Clinical Trial Support

Accepting Applications

Phone: 203-405-0585 Email: BattenDisease@rarediseases.org Fax: 203-349-3836

Related Rare Diseases: Juvenile CLN3 Disease, Síndrome de la piel escaldada por estafilococos, Congenital Myopathy ...

Resource(s): BattenDisease-ClinicalTrial

Batten Disease Emergency Relief

Accepting Applications

Phone: 203-405-0585 Email: NordERF@rarediseases.org Fax: 203-349-3836

Related Rare Diseases: Juvenile CLN3 Disease, Síndrome de la piel escaldada por estafilococos, Congenital Myopathy ...

Resource(s): BattenDisease-ERF

Batten Disease Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-405-0585 Email: battendisease@rarediseases.org Fax: 203-349-3836

Related Rare Diseases: Juvenile CLN3 Disease, Síndrome de la piel escaldada por estafilococos, Congenital Myopathy ...

Resource(s): PAP_BattenPrem&Copay

Bile Acid Synthesis and Zellweger Spectrum Disorders Medical Assist

Accepting new applications and re-enrollments for next year

Phone: 877-291-7805 Email: BileAcidSynthesis@rarediseases.org Fax: 203-486-8803

Related Rare Diseases: Bile Acid Synthesis Disorders, Zellweger Spectrum Disorders, Aciduria argininosuccínica, ...

Bile Acid Synthesis and Zellweger Spectrum Disorders Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 877-291-7805 Email: BileAcidSynthesis@rarediseases.org Fax: 203-486-8803

Related Rare Diseases: Bile Acid Synthesis Disorders, Zellweger Spectrum Disorders, Aciduria argininosuccínica, ...

BPDCN Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-635-2644 Email: BPDCN@rarediseases.org Fax: 203-405-8178

Related Rare Diseases: Perivascular Epithelioid Cell Neoplasm, Neoplasia de células epitelioides perivasculares, Large Granular Lymphocyte Leukemia, ...

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

BPDCN Emergency Relief

Accepting Applications

Phone: 203-635-2644 Email: BPDCN@rarediseases.org Fax: 203-405-8178

Related Rare Diseases: Perivascular Epithelioid Cell Neoplasm, Neoplasia de células epitelioides perivasculares, Large Granular Lymphocyte Leukemia, ...

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

BPDCN Travel & Lodging Assistance

Accepting Applications

Phone: 203-616-4329 Email: BPDCNTravel@rarediseases.org Fax: 203-267-9529

Related Rare Diseases: Perivascular Epithelioid Cell Neoplasm, Neoplasia de células epitelioides perivasculares, Large Granular Lymphocyte Leukemia, ...

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

Cerebrotendinous Xanthomatosis (CTX) Premium Copay Assistance

Accepting new applications for current year

Phone: 800-999-6673 Email: ctx@rarediseases.org Fax: 203-349-8431

Related Rare Diseases: Cerebrotendinous Xanthomatosis, Leukodystrophy

CGD Copay Assistance

Accepting new applications for current year

Phone: 855-201-5096 Email: CGDassist@rarediseases.org Fax: 203-486-8462

Related Rare Diseases: Chronic Granulomatous Disease, Large Granular Lymphocyte Leukemia, Severe Chronic Neutropenia, ...

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

CGD Emergency Relief Assistance

Accepting Applications

Phone: 855-201-5096 Email: NordERF@rarediseases.org Fax: 203-486-8462

Related Rare Diseases: Chronic Granulomatous Disease, Large Granular Lymphocyte Leukemia, Severe Chronic Neutropenia, ...

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

CGD Medical Assistance

Accepting new applications for current year

Phone: 855-201-5096 Email: CGDassist@rarediseases.org Fax: 203-486-8462

Related Rare Diseases: Chronic Granulomatous Disease, Large Granular Lymphocyte Leukemia, Severe Chronic Neutropenia, ...

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

Classical Homocystinuria (HCU) Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-616-4327 Email: hcu@rarediseases.org Fax: 203-635-4163

Related Rare Diseases: Homocystinuria due to Cystathionine Beta-Synthase Deficiency, PCSK1 Deficiency, Pityriasis Rubra Pilaris, ...

Resource(s): MedicalAssist_Classical HCU-Revised Apr.2023

Clear Cell Sarcoma Clinical Trial Travel and Lodging Assistance

Accepting Applications

Phone: 203-263-9484 Email: sarascure_ccstravel@rarediseases.org Fax: 203-635-7475

Related Rare Diseases: Soft Tissue Sarcoma, Liposarcoma, Sarcoma de tejidos blandos ...

Resource(s): ClearCellSarcoma-SarasCure-CTTL

Cushings Syndrome Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 855-864-4018 Email: cushings@rarediseases.org Fax: 203-517-0978

Related Rare Diseases: Cushing Syndrome

Cushings Syndrome Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 855-864-4018 Email: cushings@rarediseases.org Fax: 203-517-0978

Related Rare Diseases: Cushing Syndrome

Cystinosis Copay Assistance

Accepting new applications for current year

Phone: 855-201-5087 Email: cystinosis_assist@rarediseases.org Fax: 203-486-8033

Related Rare Diseases: Cystinosis

Resource(s): Cystinosis-PAP-Spanish, Cystinosis PAP FAQ 1-2019

Cystinosis Emergency Relief

Accepting Applications

Phone: 855-201-5087 Email: NordERF@rarediseases.org Fax: 203-486-8033

Related Rare Diseases: Cystinosis

Resource(s): Cystinosis-PAP-Spanish, Cystinosis PAP FAQ 1-2019

Cystinosis Medical Assistance

Accepting new applications for current year

Phone: 855-201-5087 Email: cystinosis_assist@rarediseases.org Fax: 203-486-8033

Related Rare Diseases: Cystinosis

Resource(s): Cystinosis-PAP-Spanish, Cystinosis PAP FAQ 1-2019

Cystinuria Medical Assistance

Accepting new applications for current year

Phone: 866-218-7975 Email: cystinuria@rarediseases.org Fax: 203-405-8778

Related Rare Diseases: Cystinuria, Homocystinuria due to Cystathionine Beta-Synthase Deficiency

Cystinuria Premium Copay Assistance

Accepting new applications for current year

Phone: 866-218-7975 Email: cystinuria@rarediseases.org Fax: 203-405-8778

Related Rare Diseases: Cystinuria, Homocystinuria due to Cystathionine Beta-Synthase Deficiency

DISC-1459-501 EPP Study Travel & Lodging Assistance

Referral Required

Phone: 203-263-9188 Email: EPP@rarediseases.org Fax: 203-621-3238

Related Rare Diseases: Erythropoietic Protoporphyria and X-Linked Protoporphyria, X-Linked Protoporphyria

Duchenne Muscular Dystrophy Medical Assistance

Accepting new applications for current year

Phone: 866-218-8172 Email: DMD@rarediseases.org Fax: 203-263-9597

Related Rare Diseases: Duchenne Muscular Dystrophy, Congenital Muscular Dystrophy, Distrofia muscular de Duchenne, ...

Resource(s): DMD-PAP

Duchenne Muscular Dystrophy Premium Copay Assistance

Accepting new applications for current year

Phone: 866-218-8172 Email: DMD@rarediseases.org Fax: 203-263-9597

Related Rare Diseases: Duchenne Muscular Dystrophy, Congenital Muscular Dystrophy, Distrofia muscular de Duchenne, ...

Resource(s): DMD-PAP

Eva’s Butterfly Wishes Experience for Rare Patients

Accepting Applications

Phone: 877-291-7813 Email: EvasButterflyWishes@rarediseases.org Fax: 203-486-8130

Related Rare Diseases: Walker Warburg Syndrome, ZC4H2-Associated Rare Disorders (ZARD), Dandy Walker Malformation, ...

Resource(s): Evas-Butterfly-Wishes-for RareChildren-revised

Fabry Disease Medical Assistance

Accepting new applications for current year

Phone: 203-433-2455 Email: Fabry@rarediseases.org Fax: 203-643-2020

Related Rare Diseases: Fabry Disease, Leucodistrofia, RYR1-Related Diseases ...

Resource(s): Fabry_PAP_MedicalAssist

Fabry Disease Premium Copay Assistance

Accepting new applications for current year

Phone: 203-433-2455 Email: Fabry@rarediseases.org Fax: 203-643-2020

Related Rare Diseases: Fabry Disease, Leucodistrofia, Leukodystrophy ...

Resource(s): Fabry_PAP_PremCopay

Floxuridine Medication Assistance

Accepting Applications

Phone: 203-516-0962 Email: floxuridine@rarediseases.org Fax: 203-207-9896

Related Rare Diseases: Cholangiocarcinoma, Polycystic Liver Disease, Carcinoma de células de Merkel ...

Resource(s): Floxuridine-Medication-Assistance-12

Gaucher’s Disease Premium Copay Assistance

Temporarily Waitlisting

Phone: 203-296-3486 Email: gaucherdiseases@rarediseases.org Fax: 203-349-3189

Related Rare Diseases: Gaucher Disease, Síndrome de la piel escaldada por estafilococos

Guillain-Barre Emergency Relief Assistance

Temporarily Waitlisting

Phone: 203-309-3896 Email: GBSassistance@rarediseases.org Fax: 203-740-1862

Related Rare Diseases: Guillain-Barré Syndrome, Síndrome de Guillain Barre

Resource(s): GBS_PAP_EmergRelief_06_2023

Hemophilia Emergency Relief

Accepting Applications

Phone: 203-514-7192 Email: hemophilia@rarediseases.org Fax: 475-204-3597

Related Rare Diseases: Acquired Hemophilia, Hemophilia A, Hemophilia B, ...

Resource(s): EmergRelief_Hemophilia (2), EmergRelief_Hemophilia-SPANISH (2)

Hunter Syndrome Medical Assistance

Accepting new applications for current year

Phone: 203-694-0412 Email: huntersyndrome@rarediseases.org Fax: 203-349-3190

Related Rare Diseases: Acromesomelic Dysplasia, Froelich Syndrome, Mucopolysaccharidoses, ...

Hunter Syndrome Premium Copay Assistance

Accepting new applications for current year

Phone: 203-694-0412 Email: huntersyndrome@rarediseases.org Fax: 203-349-3190

Related Rare Diseases: Acromesomelic Dysplasia, Froelich Syndrome, Mucopolysaccharidosis Type II, ...

Hurricane & Natural Disasters Emergency Relief

Accepting Applications

Phone: 877-291-8082 Email: hurricane@rarediseases.org Fax: 203-486-8941

Related Rare Diseases: ZC4H2-Associated Rare Disorders (ZARD), Trastornos raros asociados a ZC4H2 (ZARD), Síndrome de la piel escaldada por estafilococos ...

Hypophosphatasia (HPP) Emergency Relief

Accepting Applications

Phone: 866-828-8902 Email: NordERF@rarediseases.org Fax: 203-349-8446

Related Rare Diseases: Hypophosphatasia

Hypophosphatasia (HPP) Medical Assistance

Accepting new applications for current year

Phone: 866-828-8902 Email: hpp@rarediseases.org Fax: 203-349-8446

Related Rare Diseases: Hypophosphatasia

Resource(s): HPP-PAP

Hypophosphatasia (HPP) Premium Copay Assistance

Accepting new applications for current year

Phone: 866-828-8902 Email: hpp@rarediseases.org Fax: 203-349-8446

Related Rare Diseases: Hypophosphatasia

Resource(s): HPP-PAP

IgA Nephropathy Medical Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-309-3276 Email: IGAnephropathy@rarediseases.org Fax: 475-206-0857

Related Rare Diseases: IgA Nephropathy, Síndrome urofacial

IgA Nephropathy Premium Copay Assistance

Accepting new applications and re-enrollments for next year

Phone: 203-309-3276 Email: IgAnephropathy@rarediseases.org Fax: 475-206-0857

Related Rare Diseases: IgA Nephropathy, Síndrome urofacial

IWMF Travel and Lodging Assistance

Accepting new applications for current year

Phone: 203-308-5902 Email: IWMFtravel@rarediseases.org Fax: 203-293-9613

Related Rare Diseases: Waldenström Macroglobulinemia

Resource(s): IWMF T&L-revised June2023 (1)

LEMS Premium Copay Assistance

Accepting new applications for current year

Phone: 203-616-4308 Email: LEMS@rarediseases.org Fax: 203-349-3198

Related Rare Diseases: Lambert-Eaton Myasthenic Syndrome, Froelich Syndrome

Resource(s): LEMS-PAP