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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 syndrome, Opsoclonus Myoclonus, etc.
    Questcor Pharmaceuticals, Inc.
    Contact: Acthar Support & Access Program at 1-888-435-2284
    Fax number: 1-203-798-2289

  • BUPHENYL® Medication Assistance
    (sodium phenylbuterate)
    Conditions: Urea cycle disorders
    Hyperion Therapeutics
    Contact: Reimbursement Hotline at 1-800-711-0811
    Fax number: 1-203-349-3277

  • CARBAGLU Medication Assistance
    Conditions: NAGS Deficiency
    Orphan Europe
    Contact: NORD at 1-800-999-6673 x224
    Fax number: 1-203-349-3278

  • 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
    Fax number: 1-203-349-3279

  • CYSTADANE® Medication Assistance
    (betaine anhydrous for oral solution)
    Conditions: Homocystinuria
    Rare Disease Therapeutics, Inc.
    Contact: NORD at 1-800-999-6673 x 336
    Fax number: 1-203-349-3280

  • ITB® Therapy Assistance
    Lioresal® Intrathecal (baclofen injection)
    Conditions: Severe spasticity
    Medtronic, Inc.
    Contact: NORD at 1-800-999-6673 x 455
    Fax number: 1-203-349-3281

  • MATULANE® Medication Assistance
    (procarbazine hydrochloride)
    Conditions: Hodgkins lymphoma (Stage III and IV)
    Sigma-Tau Pharmaceuticals, Inc.
    Contact: NORD at 1-800-999-6673 x 336
    Fax number: 1-203-349-3282

  • Opium Tincture® Medication Assistance
    Conditions: Severe diarrhea
    Marathon Pharmaceuticals
    Contact: NORD at 1-800-999-6673 x 459
    Fax number: 1-203-349-3193

  • Seconal® Medication Assistance
    Conditions: Short term sleep disorders
    Marathon Pharmaceuticals
    Contact: NORD at 1-800-999-6673 x 459
    Fax number: 1-203-349-3193

  • Therakos Photopheresis Therapy Assistance
    Conditions: Cutaneuos T-Cell lymphoma (CTCL)
    Therakos, Inc
    Contact: NORD at 1-877-241-7220
    Fax number: 1-203-428-4472

  • VSL#3 DS Medical Food Patient Assistance Program
    Conditions: Ulcerative colitis or ILEAL pouch
    Sigma-tau Pharmaceuticals, Inc.
    Contact: NORD 1-877-279-2459
    Fax number: 1-203-349-8172


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
    Fax number: 1-203-274-8700

  • Cervical dystonia (spasmodic torticollis)
    Contact:1-800-999-6673 x 327
    Fax number: 1-203-349-3003

  • Chronic non-infectious uveitis
    Contact:1-800-999-6673 x 456
    Fax number: 1-203-349-3187

  • Congenital Sucrase-isomaltase Insurance Premium Program (CSID)
    Contact: 1-800-275-0589 Email: CSID@rarediseases.org
    Fax number: 1-203-349-8431

  • Cryopyrin Associated Periodic Syndromes
    Contact:1-800-999-6673 x 323
    Fax number: 1-203-349-3278

  • CTX (Cerebrotendinous Xanthomatosus)
    Contact: 1-800-999-6673 x 219
    Fax number: 1-203-349-8431

  • Cushing's Syndrome/Cushing's Disease
    Contact: 1-800-999-6673 x 326 Email: Cushings@rarediseases.org
    Fax number: 1-203-517-0978

  • Diamond Blackfan Anemia
    Contact: 1-800-459-7599 Email: DBA@rarediseases.org
    Fax number: 1-203-635-4163
  • Gaucher Disease
    Contact: 1-800-999-6673 ext. 219
    Fax number: 1-203-349-3189

  • Hunter Syndrome
    Contact: 1-800-999-6673 ext. 458
    Fax number: 1-203-349-3190

  • IGF-1 Deficiency
    Contact: 1-844-314-4045 Email: igf1deficiency@rarediseases.org
    Fax number: 1-203-349-3198
  • Lysosomal Acid Lipase (LAL) Deficiency
    Contact: 1-800-999-6673 ext. 335 Email: lalclo3@rarediseases.org
    Fax number: 1-203-635-4035

  • Macular Edema Associated with Retinal Vein Occlusion
    Contact: 1-800-999-6673 x219
    Fax number: 1-203-349-3191

  • Morquio A Syndrome
    Contact: 1-844-675-2354 Email: MPS-IV-A@rarediseases.org
    Fax number: 1-203-349-3200
  • Motor Tic Disorder 
    Contact: 1-800-999-6673 x343
    Fax number: 1-203-429-4153

  • Mucopolysaccharidosis Type VI (Maroteaux-Lamy Syndrome)
    Contact: 1-877-798-8716 Email: MPS-VI@rarediseases.org
    Fax number: 1-203-349-3203

  • N-Acetyl Glutamate Synthetase (NAGS) Deficiency
    Contact: 1-800-999-6673 x219
    Fax number: 1-203-349-3192

  • Neurogenic Orthostatic Hypotension
    Contact: 1-844-827-8743 Email: noh@rarediseases.org
    Fax number:  1-203-349-3199

  • Paroxysmal Nocturnal Hemoglobinuria (PNH)
    Contact: 1-800-999-6673 x 324
    Fax number: 1-203-517-4297

  • Peripheral T-cell Lymphoma
    Contact: 1-877-805-0411
    Fax number: 1-203-203-349-3194

  • Phenylketonuria (PKU)
    Contact: 1-855-628-0646 Email: PKU@rarediseases.org
    Fax number: 1-203-798-2294

  • Psoriatic Arthritis
    Contact: 1-855-653-3220 Email: psoriaticarthritis@rarediseases.org
    Fax number: 1-203-349-8446

  • Short Bowel Syndrome (SBS)
    Contact: 1-855-218-9877 Email: SBS@rarediseases.org
    Fax number: 1-203-429-8717


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 NORD's current Travel and Lodging Programs.

  • ATTR
    APOLLO ALN-TTR02 Phase III
    Alnylam Pharmaceuticals
    Contact: 1-800-634-7207
    Fax number: 1-203-635-4095

  • Cystic Fibrosis
    PTC 124-GD-009-e-CF
    PTC Therapeutics
    Contact: 1-866-647-9325 x 333

  • Cystic Fibrosis
    PTC 124-GD-021-CF
    PTC Therapeutics
    Contact: 1-866-647-9325 x 333
    Fax number:  1-203-674-9940
  • Cystic Fibrosis 
    PTC 124-GD-023-CF
    PTC Therapeutics
    Contact: 1-866-647-9325 x 333
    Fax number: 1-203-674-9941
  • Duchenne Muscular Dystrophy
    PTC124-GD-016-DMD
    PTC Therapeutics
    Contact: 1-866-647-9325 x 333
    Fax number: 1-203-674-9937
  • Duchenne Muscular Dystrophy 
    PTC124-GD-020-DMD
    PTC Therapeutics
    Contact: 1-866-647-9325 x 333
    Fax number: 1-203-674-9938
  • Duchenne Musular Dystrophy 
    PTC 124-GD-020e-DMD
    PTC Therapeutics
    Contact: 1-866-647-9325 x 333
    Fax number: 1-203-674-9939
  • Lysosomal Acid Lipase Deficiency Study
    LALCLO3
    Synageva
    Contact: 1-800-999-6673 x 335
    Fax number: 1-203-635-4052

  • Spinal Muscular Atrophy
    ISIS SMNRX
    Isis Pharmaceuticals, Inc. US
    Contact: 855-316-4755

 
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