Jul. 14, 2014
Posted at July 14, 2014 4:29 pm by Mary Dunkle

2 Responses to NORD and Frontline Medical Communications Develop Partnership for Professional Education

  1. Susan Krug says:

    Yes I do believe outreach to the Primary physician is the most important. As a patient with a rare disease and was mid-diagnosed on and off for 50yrs, until the development of DNA testing for HPP was perfected. I truly believe its the most import part of awareness. Research is wonderful and even getting one doctor here and there to be specialist at university/research hospital is great. But the you can’t go to a specialist if the primary doesn’t diagnose you with an illness/disease. So educating the primary so they have more to look at than their 20 yr old medical books is a big step forward. Even if its just supplement booklets listing rare disease and their symptoms.. It will help them think twice before telling patients the pain they feel is in their heads. and to take low ranges on blood test just as seriously as high.

  2. Jennifer V. says:

    I believe that information regarding rare diseases needs to be disseminated to family physicians and pediatricians. My son was diagnosed with Leigh’s disease a little over a year ago. His pediatrician was very honest about her comfort level towards my son and knowing very little about his disease. She reassured us that she would do whatever she could to help, but alot of the time she refers us out to my son’s pulmonologist for most medical care. Conferences/seminars should be held to educate medical professionals 2-3 times a year. From most frequent rare diseases surfacing, where to start when receiving such
    patients, how to diagnose/treat and open form for Q&A. We need more
    doctors willing to take on rare diseases!!!

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