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Session 21 peter_saltonstall
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Session 21 peter_saltonstall


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  • 1. NORD Information Services: Our “Helpline”
    • European Conference on Rare Diseases
    • Krakow, Poland
    • May 14, 2010 Phone 203.744.0100 Fax 203.798.2291 Address 55 Kenosia Avenue, P.O. Box 1968 Danbury, CT 06813-1968
  • 2. What is NORD?
    • Advocacy (annual & lifetime caps, pre-existing conditions, Compassionate Allowances)
    • Education (for patients/families, medical professionals and the public)
    • Research (NORD Research Program, facilitate development of new treatments)
    • Patient Assistance Programs (free drug, co-pay, travel & relocation, drugs in short supply)
  • 3. Objectives of NORD’s Helpline:
    • Provide information on rare diseases in patient-friendly language
    • Referrals to patient organizations and support groups
    • Assistance in identifying other helpful resources for patients and their families
    • Helping patients and researchers find each other
    • Helping patients by increasing awareness of rare diseases among medical professionals
  • 4. Profile of Those Who Contact NORD’s Information Service:
    • Patients, parents of patients, other family members or friends
    • Professionals assisting patients: teachers, social workers, school nurses, etc.
    • Physicians and other medical professionals
    • First contact often made soon after diagnosis
    • Many undiagnosed patients also contact NORD
    • Students, reporters and others writing about rare diseases
  • 5. Resources in NORD’s Information Center
    • Rare Disease Database: reports in patient-friendly language on 1,220+ rare diseases
    • Organizational Database: international database of patient organizations and support groups
    • Reports provide information on symptoms, causes, clinical trials, treatments, and patient organizations
    • Website, eNews, Networking Program
    • Referrals to government and other sources of assistance
  • 6. Information Center Staff
    • Registered nurse: provides medical explanations and guidance; assists with insurance, reimbursement, and caregiving issues
    • Genetic counselor: helps families find genetic testing centers, answers questions, alleviates concerns
    • Two information specialists: provide basic information and transfer callers to RN or genetic counselor if necessary
  • 7. Why Do People Contact NORD?
    • Seeking information about diseases
    • Seeking a support group or patient organization
    • Problems related to insurance, off-label reimbursement, community or school resources
    • Seeking a diagnosis; not sure where to turn for help
    • Seeking an MD familiar with their disease
    • Hoping to participate in clinical trials
  • 8. How Do People contact NORD?
    • Emails (500 per week)
    • Phone calls (100 per week)
    • Letters (10 per week)
    • Some people referred to NORD by diagnosing physician, genetic counselor or other health professional
    • Some now approach NORD through social media: We are creating guidelines for our staff related to this
    • Our staff also respond to questions on the NORD/Inspire community
  • 9. Target Population
    • Patients
    • Family members
    • Medical professionals
    • Social workers
    • Teachers
    • The public
  • 10. Sources of Information:
    • National Institutes of Health
    • U.S. Food and Drug Administration
    • Centers for Disease Control & Prevention
    • Disease-specific Patient Organizations
    • GeneTests/GeneClinics
    • OMIM (National Library of Medicine)
    • PubMed