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「の経験リビングレア自分で体験しなければ理解できないものです。」 -

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Rare Disease Community-based Perspectives, Insights and Experiences (P.I.E.)

  • Why Living Rare Editorials?
    It has become a common understanding across the rare disease ecosystem that the "Living Rare" experience can only be authentically known by community-based people with personally lived rare disease experiences. Community-focused patient advocates that do not personally identify as a person with a debilitating rare condition, a caregiver or a care partner classifies as allies to the "Living Rare" experience. Dedicated allies understand that they cannot accurately represent nor interpret, the lived rare disease experience. Together, dedicated allies partnered with community-based activists and lived experience experts encompass the foundation of RAM's global network. Historically, detached advocacy professionals have facilitated the spread of widespread misinformation regarding community-based matters. Misinformation can be damaging for the people of the community and result in increased therapeutic development costs, burdensome clinical trials, inaccurate market research conclusions, failures in meeting trial recruitment goals, offensive community facing campaigns, and overall mistrust between the community-based landscape and the biopharmaceutical industry. RAM's rare360 program seeks to address the distribution of misinformation in support of the best interests of the global rare disease ecosystem. Each person "Living Rare" (i.e. a person living with a debilitating rare condition, or their carer), all possess valuable perspectives, insights and experiences (PIE) that can, when accurately communicated, unlock the 360° view of real-world community-based insights and understandings.
  • Who writes Living Rare Editorials?
    Living Rare Editorials are insightful articles written by the team, leaders of an active RAM Collaboration, or a guest writer who is either a community-based professional or a patient advocacy ally dedicated to improving the lives of people living with a rare condition. Upholding RAM's moral code of conduct, each Living Rare Editorial is reviewed by the Rare360 Content Review Board and represents the authentic Perspectives, Insights and Experiences (PIE) of the real-world patient community. .
  • How do I sign up for notifications of new Living Rare Editorial publications?
    If you are interested in being notified upon the publication of the next Living Rare Editorial, you have options. 1. Subscribe to our email Living Rare Newsletter (found at the footer of each page); 2. Subscribe to RAM's Telegram Broadcast at; 3. Follow us on social media @RareAdvocacy (direct links found at the footer of each page).
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