Session 21 peter_saltonstall

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Session 21 peter_saltonstall

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

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