Since 1987, NORD has administered programs to assist uninsured or
under-insured individuals in securing life-saving or life-sustaining
medications. In addition to the estimated 50 million Americans who have no
health insurance, an increasing number of insured individuals have policies
that do not reimburse for prescription drugs. Others have policies with low
annual caps on prescription drug expenditures.
NORD works closely with humanitarian-minded pharmaceutical and biotechnology
companies to ensure that certain vital medications are available to those
individuals whose income is too high to qualify for Medicaid but too low to
pay for their prescribed medications. NORD’s programs have set the standards
for fairness, equity, and unbiased eligibility. The NORD programs have
gained respect from the patient communities, pharmaceutical companies,
healthcare professionals, government officials, and the public.
Participants have assurance that NORD protects their confidentiality.
There is no conflict of interest with respect to NORD’s eligibility
decisions.
Now Available: NORD Medical Foods Assistance Program for Patients with Phenylketonuria (PKU)
The National Organization for Rare Disorders (NORD) Medical Foods Assistance Program for Patients
with Phenylketonuria (PKU) is now accepting applications for financial support. The program is a new
safety net that provides financial support for PKU patients without benefit coverage to obtain their
preferred medical food (limited to amino acid modified products that contain a synthetic source of protein
and exclude phenylalanine). Funding is limited and patients must meet the following criteria:
- Diagnosis of PKU via written attestation by physician
- Residents of the United States and its territories
- Documentation demonstrating exhaustion of available state assistance and/or denial of insurance coverage for medical foods
- Income up to 500% of Federal Poverty Level (based on family size)
To apply for the program, please download this form, fill it out, and fax it to 203-798-2964, or mail it to:
NORD
55 Kenosia Avenue
Danbury, CT 06813
To obtain more information on the NORD Medical Foods (PKU) Program, call 1-877-798-8716.
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Currently, NORD administers programs for:
- Acorda Therapeutics
Zanaflex Capsules™ Uninsured Individual Program
(Tizanidine Hydrochloride)
Conditions:
Spasticity
Contact:
Reimbursement Assistance Program at 1-800-464-0097
- ATON PHARMA
ATON PHARMA Patient Assistance Program
Cuprimine, Demser, Edecrin, Lacrisert, Mephyton, Syprine
Conditions:
Wilson’s Disease, Rheumatoid Arthritis, Cystinuria, pheochromocytoma, edema associated with congestive heart failure, cirrhosis of the liver, renal disease, idiopathic edema, lymphedema; dry eye syndromes, vitamin k deficiency
Contact:
The ATON Call Center toll-free at 1-877-286-6549
- BioMarin Pharmaceuticals
Naglazyme Premium/Co-Payment Assistance Program For Privately Insured Individuals
(galsulfase)
Conditions:
Mucopolysaccharidosis Type VI (Maroteaux-Lamy Syndrome)
Contact:
1-800-999-6673
- Cephalon, Inc.
TRISENOX® Patient Assistance Program
(arsenic trioxide) injection
Conditions:
relapsed or refractory acute promyelocytic Leukemia (APL), Multiple Myeloma
Contact:
Cephalon Oncology Reimbursement Expertise, 1-866-261-7730
- Cephalon, Inc.
PROVIGIL® Assistance Program
(modafinil)
Conditions:
Narcolepsy
Contact:
the Provigil® Reimbursement Assistance Hotline at 1-800-675-8415
- Medtronic, Inc.
ITB® Therapy Patient Assistance Program
Lioresal® Intrathecal (baclofen injection)
Conditions:
Severe spasticity
Contact:
NORD at 1-800-999-6673 e-mail ealmonte@rarediseases.org
- Jazz Pharmaceutical, Inc.
XYREM® Patient Assistance Program
(sodium oxybate)
Conditions:
Narcolepsy with cataplexy
Contact:
Xyrem Success Program at 1-866-997-3688
- Questcor Pharmaceuticals, Inc.
ACTHAR® GEL Patient Assistance Program
(ACTH)
Conditions:
Infantile spasms, multiple sclerosis, Crohns disease, Adrenal insufficiency, etc.
Contact:
Acthar Support & Access Program at 1-888-435-2284
- Rare Disease Therapeutics, Inc.
CYSTADANE® Patient Assistance Program
(betaine anhydrous for oral solution)
Conditions:
Homocystinuria
Contact:
NORD at 1-800-999-6673 e-mail nvondle@rarediseases.org
- Rare Disease Therapeutics, Inc.
ORFADIN® Patient Assistance Program
(nitisinone)
Conditions:
Hereditary Tyrosinemia Type I
Contact:
NovaFactor at 1-888-454-8860
- Sanofi - Aventis
RILUTEK® Patient Assistance Program
(riluzole)
Conditions:
Amyotrophic lateral sclerosis
Contact:
NORD at 1-800-459-7599 or e-mail ealmonte@rarediseases.org
- Sigma-tau Pharmaceuticals, Inc.
CARNITOR® Drug Assistance Program
(L-Carnitine or levo carnitine)
Conditions:
Primary systemic carnitine deficiency, dialysis, chronic fatigue syndrome (CFS), several rare metabolic disorders
Contact:
NORD at 1-800-999-6673 e-mail nvondle@rarediseases.org
- Sigma-tau Pharmaceuticals, Inc.
MATULANE® Drug Assistance Program
(procarbazine hydrochloride)
Conditions:
Hodgkins disease (Stage III and IV) and certain other lymphomas
Contact:
NORD at 1-800-999-6673 e-mail nvondle@rarediseases.org
- Teva Neuroscience, Inc.
COPAXONE® Medication Assistance Program
(glatiramer acetate, for injection)
Conditions:
Multiple sclerosis (relapsing-remitting)
Contact:
Shared Solutions at 1-800-887-8100
- Teva Pharmaceuticals Inc. USA
Tev-Tropin® Patient Assistance Program
Tev-Tropin® Co-Payment Assistance Program For Privately Insured Individuals
Somatropin (rDNAorigin) for injection
Conditions:
growth failure due to inadequate secretion of normal endogenous growth hormone
Contact:
Growth Solutions at 1-866-838-8767
- Ucyclyd Pharma, Inc.
BUPHENYL®
(sodium phenylbuterate)
Conditions:
Urea cycle disorders
Contact:
Ucyclyd Reimbursement Hotline at 1-800-711-0811
- NORD MS Premium /Co-Payment Assistance Program
Conditions:
Multiple Sclerosis (MS)
Contact:
1-800-634-7207
- NORD CAPS Premium & Co-payment Assistance Fund
Conditions:
Cryopyrin-associated periodic syndromes
Contact:
1-800-999-6673 x 1224
- NORD Cervical Dystonia Co-Payment Assistance Program
Conditions:
Cervical Dystonia (Spasmodic Torticollis)
Contact:
1-800-999-6673 x 1311
- NORD CPP Premium /Co-Payment Assistance Program
Conditions:
Chronic Plaque Psoriasis (CPP)
Contact:
1-800-634-7207
- NORD Intrathecal Therapy for Pain Management Co-Payment Assistance Program
Conditions:
Intrathecal Therapy for Pain Management
Contact:
1-888-774-2581
- NORD Advanced Renal Cell Carcinoma Co-Payment Assistance Program
Conditions:
Advanced Renal Cell Carcinoma
Contact:
1-866-828-8902
- NORD Hodgkins Lymphoma Co-Payment Assistance Program
Conditions:
Hodgkins Lymphoma
Contact:
1-800-999-6673
- NORD Chronic Non-Infectious Uveitis Co-Payment Assistance Fund
Conditions:
Non-infectious uveitis
Contact:
1-800-999-6673
- NORD Hunter Syndrome (MPS II) Premium/Co-Payment Assistance Program
Conditions:
Hunter Syndrome (MPS II)
Contact:
1-800-999-6673
- NORD MPS VI Premium/Co-Payment Assistance Program
Conditions:
mucopolysaccharidosis Type VI (Maroteaux-Lamy Syndrome)
Contact:
1-800-999-6673
- NORD Nephrotic Syndrome Premium/Co-Payment Assistance Program
Condition:
Nephrotic Syndrome
Contact:
1-888-435-2284
- NORD PNH Premium/Co-Payment Assistance Program
Conditions:
Paroxysmal Nocturnal Hemoglobinuria
Contact:
1-800-999-6673
- NORD Infantile Spasms Premium/Co-Payment Assistance Program
Conditions:
Infantile spasms/West Syndrome
Contact:
NORD at 1-888-435-2284
- NORD Opsoclonus Myoclonus Premium/Co-Payment Assistance Program
Conditions:
Opsoclonus Myoclonus
Contact:
NORD at 1-888-435-2284
- NORD Hepatocellular Carcinoma Co-Payment Assistance Program
Conditions:
Hepatocellular Carcinoma
Contact:
1-866-828-8902
- NORD Phenylketonuria (PKU) Premium/Co-Payment Assistance Program
Conditions:
Phenylketonuria
Contact:
1-866-924-0100
- MS Related Acute Exacerbation Premium/Co-Payment Assistance Program
Conditions:
MS related acute exacerbation
Contact:
1-888-435-2284
NORD also administers Early Access Programs for investigational new drugs (INDs) under the
Food and Drug Administration’s approved “Treatment-IND” programs that allow for
a limited number of individuals to receive certain investigational drugs prior to FDA marketing approval,
as well as a Travel Assistance Program that provides travel and lodging assistance for patients participating
in clinical and research studies.
For information about the programs listed on this page, please use the contact information associated with
that particular program or write to: PatientAssistance@rarediseases.org.