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Rare Disease Day 2017 Focuses on Research and Patient Involvement


  • February 28, 2017

  • Rare Disease DayWorldwide, hundreds of patient organizations are holding awareness-raising activities based on the theme of research, because “with research, possibilities are limitless.” 

    Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. Patient involvement in research has resulted in more research, which is better targeted to the needs of patients. Patients no longer solely reap the benefits of research; they are empowered and valued partners from the beginning to the end of the research process.

    The idea for our Patients as Partners conference arose seven years ago, when our Disrupting Clinical Trials (DPharm) audience was asked, “When was the last time you thanked your patients for being in a clinical trial?” and no one raised their hand. Immediately we saw the need for a conference on service for patients in clinical trials. However, more importantly, we saw the urgent need for the patient perspective in driving a conference on collaborating in clinical research.

    Patients and patient research taught us empathy not only with their disease, but with their lifestyle and struggles in finding and experiencing a clinical trial. In particular, we learned the need to:

    1. Understand and incorporate the patient’s voice in designing clinical trials and developing a clinical endpoint.
    2. Vastly improve the patient’s entire experience in a clinical trial.

    The Conference Forum is proud to participate in 2017’s Rare Disease Day as we continue to advocate for patient-led research. If it were not for patient research, we would not have a conference 100% designed for the benefit of the patient. Join us this week to learn about new research into creating patient centricity as the ecosystem within pharma at the 4th Annual Patients as Partners US, March 2-3. Learn more about #Patients2017 and register here: http://bit.ly/12nEslG