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Dec. 4, 2015

TOPIC: Featured News, Get Involved

Be a Hero-Help NORD Help Patients Obtain Life-Saving Treatments

Posted by Catherine Blansfield

When you or a beloved family member is facing serious illness, the last thing you need to be concerned with is how you will pay for the medication.  

NORD’s RareCareSM Patient Services – Assistance and Access Programs

For the past 28 years, NORD has offered patient assistance programs for medication access.  Every day, the RareCareSM Patient Services team helps hundreds of patients who lack the means to pay for out-of-pocket costs of medications and testing for rare diseases.  With our help, they no longer need to choose between purchasing their medications and seeing their physicians or keeping their cupboard stocked and/or the roof over their head.   This challenge of paying for life-saving but costly medication and medical care is not just a significant concern for the uninsured, but also for people who have health insurance.  Rising deductibles, insurance premiums, and co-insurance costs prevent many people from being able to afford the treatment they need.  NORD is committed to helping all patients in need with their out-of-pocket expenses for prescribed medications.  Our cutting edge programs overcome all obstacles to treatment access, be they financial, geographical, or logistical.


  • Technological Advancements
    • Patients trust us to provide personal, compassionate and confidential assistance that eases their financial and emotional burdens. In 2015, the RareCareSM Patient Services team was revolutionized in regards to technological advancements.  NORD received a generous grant donation which allowed for the purchase of a new phone system.  This new phone system has greatly improved our ability to effectively respond to the hundreds of calls received each week to our Danbury, Connecticut location.  NORD’s newly streamlined patient application process, allowable due to the new phone system with multiple functions and capabilities, can now be accomplished in a matter of moments over the telephone.  Patients can quickly be assured that help from NORD is possible for them.  Award grants may cover insurance premiums, co-payments, deductibles, co-insurance costs, and, for certain diseases, diagnostic testing and travel expenses.  NORD’s professional and knowledgeable Patient Service Representatives assist patients throughout the United States and U.S. territories for nearly 50 disease specific programs.
    • Additional donations were used to develop and launch this summer, the RareAccess® portal, an online system offering convenience and easy access for case managers who trust NORD to care for their patients in financial need.
  • Partnerships
    • NORD works collaboratively with its pharmaceutical and biotech partners to develop assistance driven programs of excellence that are of powerful and positive impact upon patients’ lives. Physicians, pharmacists and case managers serve as vital links between NORD and our patients.
  • Clinical Trial Travel and Lodging Assistance Programs
    • Each patient who participates in a research study is creating the possibility of a potential treatment. Deciding to participate in clinical trials, therefore, is an important decision for patients and their families.  Frequently, however, the duration of time required to arrange travel to and from the study site and the costs of this travel may be considered a barrier to participation for these busy individuals, caregivers, and families.   NORD RareCareSM Patient Services is here to help.  Once funded, NORD will administer a patient assistance program offering financial support for study related expenses and concierge travel arrangements to patients participating in the clinical research study.  We understand the medical needs of the rare disease community involved, and strive to ensure that the patients feel our support and are relieved of any logistical or financial burdens associated with study participation.

What’s Ahead for NORD RareCareSM Patient Services?

With your help, the essential services provided by the RareCareSM Patient Services team will continue to a great degree in 2016.  NORD’s reputation within the rare disease community has made us a favorable choice to serve as the administrator of expanded access programs for drugs undergoing the final stages of clinical study and show impact upon untreatable, life limiting diseases.  The orphan drug market is expected to grow significantly by the end of 2020.  Many more manufacturers have been entering into this healthcare segment which is very good news for the rare disease community.  We anticipate that the coming years will offer many more patients with hope for new treatments or possible cures and, with great appreciation to our generous donors, NORD assistance services will be there right along with them, ensuring each one the treatment and care they so justly deserve.

Your donations will help NORD to build upon the programs offered through RareCare℠ Patient Services.

To make a donation please click here.

6 Responses to “Be a Hero-Help NORD Help Patients Obtain Life-Saving Treatments”

  1. Doris says:

    I have mitochondrial disease – looking for assistance buying the “cocktail” medications – my insurance company (Humana Gold) does not offer these medications – please help

    • Christina Jensen says:


      For support related to mitochondrial disease, our member organization the United Mitochondrial Disease Foundation, would be better able to address your question. Please connect with them through their website here:

  2. Jenny-Lee Collins says:

    Hello my name is Jenny-Lee Collins I suffer from autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy (APECED) which includes: Diabetes type 1, Hypothyroidism, Addison’s disease, Pernicious anemia and Chronic mucocutaneous candidiasis. I am currently in the 4th year of my studies at the Medical University of Gdansk, Poland. I was wondering if there is a possibility for me to take part in your research study.
    Sincerely, Jenny-Lee Collins

    • Christina Jensen says:

      Hi Jenny,

      We recommend that you reach out to the following organization. NORD does not have a study listed for APECED, but the following organization may be able to assist you.

      APS Type 1 Foundation
      18 Rolling Hill Drive
      Morristown, NJ 07960
      Phone: (973) 886-9137

  3. jeannie ball says:

    Searching for assistance and/or aid for 50 year old male diagnosed with Parsonage Turner Syndrome over 1 year ago with consistent deterioration of use of left arm. Severely affecting ability to function normally. Please advise if help is available.

    • Christina Jensen says:


      Thank you for your interest in our programs. Unfortunately, we do not currently have a program for Parsonage Turner Syndrome. The programs that we offer under our Patient Assistance Programs need to be funded by an outside party such as a pharmaceutical company or by individual donors. As a 501(c)(3) non-profit organization, we sincerely appreciate the help of our donors and sponsors to establish these programs.

      If you are interested in fundraising for NORD, please contact our Development team at