NORD's Patient Assistance Programs

Since 1987, NORD has administered Patient Assistance Programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford.  Over the course of time NORD has expanded its services to offer financial assistance with insurance premiums and patient co-pay fees as well as assistance with reasonable and appropriate diagnostic testing expenses and travel to and consultation with disease specialists that are not covered by a patient’s insurance plan.  NORD also works in partnership with pharmaceutical and biotechnology companies as well as patient organizations to provide travel and lodging assistance for study participants enrolled in specific rare disease clinical trials.

Although eligibility criteria can vary by program most of NORD’s patient assistance programs require the following:

• Patient must have an applicable diagnosis or physician referral
• Patient must be a legal US resident
• Patient must meet NORD’s financial need criteria

Maximum award levels can also vary by program.  Awards are made on a calendar year basis and patients are encouraged to reapply for subsequent awards.  Once a complete application is received NORD typically reviews the application and gets back to the patient with an award decision within two business days.

To apply for assistance or contact a NORD representative with questions about a program NORD administers please locate the program that best meets your situation from the list below.  The list consists of a group of medication specific assistance programs, disorder specific programs, and clinical trial related programs.

If NORD does not have a program for your disease, you can view a list of other resources and tools for potential sources of financial and medication assistance resources. Click here to view other resources.

Medication Assistance Programs

NORD’s Medication Assistance Programs are designed to help patients who are without insurance or are underinsured obtain access to these medications.  The following is a list of NORD’s current Medication Assistance Programs.

• ACTHAR® GEL Medication Assistance
  (ACTH)
  Conditions: Infantile spasms, multiple sclerosis, nephrotic syndrom, opsoclonus myoclonus, etc.
  Questcor Pharmaceuticals, Inc.
  Contact: Acthar Support & Access Program at 1-888-435-2284


• BUPHENYL® Medication Assistance
  (sodium phenylbuterate)
  Conditions: Urea cycle disorders
  Ucycld Pharma, Inc.
  Contact: Ucyclyd Reimbursement Hotline at 1-800-711-0811


• CARBAGLU Medication Assistance
  Conditions: NAGS Deficiency
  Orphan Europe
  Contact: NORD at 1-800-999-6673 x222


• CARNITOR® Medication Assistance
  (L-Carnitine or levo carnitine)
  Conditions: Primary systemic carnitine deficiency, inborn errors of metabolism resulting in secondary carnitine deficiency, carnitine deficiency in patients with end-stage renal disease who are undergoing dialysis.
  Sigma-Tau Pharmaceuticals, Inc.
  Contact: NORD at 1-800-999-6673 x 336


• CYSTADANE® Medication Assistance
  (betaine anhydrous for oral solution)
  Conditions: Homocystinuria
  Rare Disease Therapeutics, Inc.
  Contact: NORD at 1-800-999-6673 x 336


• ITB® Therapy Assistance
  Lioresal® Intrathecal (baclofen injection)
  Conditions: Severe spasticity
  Medtronic, Inc.
  Contact: NORD at 1-800-999-6673 x 455


• MATULANE® Medication Assistance
  (procarbazine hydrochloride)
  Conditions: Hodgkins Lymphoma (Stage III and IV)
  Sigma-Tau Pharmaceuticals, Inc.
  Contact: NORD at 1-800-999-6673 x 457


• Opium Tincture® Medication Assistance
  Conditions: Severe Diarrhea
  Marathon Pharmaceuticals
  Contact: NORD at 1-800-999-6673 x 459


• ORFADIN® Medication Assistance
  (nitisinone)
  Conditions: Hereditary Tyrosinemia Type I
  Rare Disease Therapeutics, Inc.
  Contact: NovaFactor at 1-888-454-8860


• Seconal® Medication Assistance
  Conditions: Short Term Sleep Disorders
  Marathon Pharmaceuticals
  Contact: NORD at 1-800-999-6673 x 459


• VSL#3 DS Medical Food Patient Assistance Program
  Conditions: Ulcerative Colitis or ILEAL Pouch
  Sigma-tau Pharmaceuticals, Inc.
  Contact: NORD 1-877-279-2459

Disease Specific Assistance Programs

NORD’s Disease Specific Assistance Programs are designed to help patients with out-of-pocket costs associated with their insurance plans such as:

• Monthly premiums
• Deductibles
• Co-payments
• Co-insurance

In addition, some programs may provide financial assistance with other expenses related to a patient’s diagnosis such as

• Travel to diagnostic centers/clinics
• Diagnostic testing
• Initial consultation with healthcare professionals
• Infusion costs for uninsured or underinsured patients

The following is a list of NORD’s current Disease Specific Assistance Programs.

• Advanced Renal Cell Carcinoma Second Line Treatment
  Contact: 1-866-828-8902


• Cervical Dystonia (Spasmodic Torticollis)
  Contact:1-800-999-6673 x 327


• Chronic Non-Infectious Uveitis
  Contact:1-800-999-6673 x 456


• Congenital Sucrase-isomaltase Insurance Premium Program (CSID)
  Contact: 1-800-275-0589 Email: CSID@rarediseases.org


• Cryopyrin Associated Periodic Syndromes
  Contact:1-800-999-6673 x 323


• CTX (Cerebrotendinous Xanthomatosus)
  Contact: 1-800-999-6673 x 219


• Cushing's Syndrome
  Contact: 1-800-999-6673 x 326 Email: Cushings@rarediseases.org


• Cytomegalovirus Retinitis (CMV)
  Contact:1-800-999-6673 x456


• Diamond Blackfan Anemia
  Contact: 1-800-459-7599 Email: DBA@rarediseases.org


• Fabry Disease
  Contact: 1-800-999-6673 ext. 219


• Gaucher Disease
  Contact: 1-800-999-6673 ext. 219


• Hodgkins Lymphoma
  Contact:1-800-999-6673 x 457


• Hunter Syndrome
  Contact: 1-800-999-6673 ext. 458


• Macular Edema Associated with Retinal Vein Occlusion
  Contact: 1-800-999-6673 x219


• Mucopolysaccharidosis Type VI (Maroteaux-Lamy Syndrome)
  Contact: 1-877-798-8716 Email: MPS-VI@rarediseases.org


• Multiple Sclerosis (MS)-Closed to new applications
  Contact: 1-800-634-7207


• Multiple Sclerosis Related Acute Exacerbation
  Contact: 1-888-435-2284


• N-Acetyl Glutamate Synthetase (NAGS) Deficiency
  Contact: 1-800-999-6673 x222


• Nephrotic Syndrome
  Contact: 1-888-435-2284


• Paroxysmal Nocturnal Hemoglobinuria (PNH)
  Contact: 1-800-999-6673 x 324


• Peripheral T-cell Lymphoma
  Contact: 1-877-805-0411


• Phenylketonuria (PKU)
  Contact: 1-855-628-0646 Email: PKU@rarediseases.org


• Primary Immune Deficiency
  Contact: 1-877-241-7220


• Tev-Tropin® Co-Payment Assistance (For Privately Insured)-Closed to new applications
  Contact: 1-800-999-6673

Travel and Lodging Assistance for Study Participants

NORD’s Travel and Lodging Assistance Programs are designed to assist patients who are participating in clinical trials with travel and lodging costs incurred during visits to study sites.  The following is a list of NORDs current Travel and Lodging Programs.

• Cystic Fibrosis
  PTC 124-GD-009-e-CF
  PTC Therapeutics
  Contact: 1-866-647-9325 x 333
  
  
• Cystic Fibrosis
  PTC 124-GD-009-CF
  PTC Therapeutics
  Contact: 1-866-647-9325 x 333
  
  
• Duchenne Muscular Dystrophy
  PTC124-GD-016-DMD
  PTC Therapeutics
  Contact: 1-866-647-9325 x 333
  
  
• Hypophosphatasia
  ENB-008-10
  Enobia Corporation
  Contact:1-800-999-6673 x264
  
  
• Hypophosphatasia
  ENB-009-10
  Enobia Pharma US
  Contact:1-800-999-6673 x264
  
  
• Hypophosphatasia
  ENB-010-10
  Enobia Pharma US
  Contact: 1-800-999-6673 x264
  
  
• Hypophosphatasia
  ENB-003-08
  Enobia Pharma US
  Contact: 1-800-999-6673 x264
  
  
• Lysosomal Acid Lipase Deficiency Study
  LALCLO3
  Synageva
  Contact: 1-800-999-6673 x 335
  
  
• Spinal Muscular Atrophy
  ISIS SMNRX
  Isis Pharmaceuticals, Inc. US
  Contact: 855-316-4755