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DISCOVER COMMUNITY-BASED INSIGHTS
LIVING RARE EDITORIALS
"THE EXPERIENCE OF LIVING RARE IS ONE THAT YOU CANNOT POSSIBLY UNDERSTAND WITHOUT EXPERIENCING IT YOURSELF." -
- Adult Living Rare
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 personal rare disease experiences. Patient advocates that do not personally identify as a person with a debilitating rare condition, a caregiver or a care partner can only classify as allies to the "Living Rare" experience. Sincere allies understand that they cannot accurately represent nor interpret, the lived rare disease experience. As a result, allies do not hesitate to partner with community-based experts. RAM is honored to have several allies contributing and supporting its global network. Historically, those who claim to be advocacy allies, but do not collaborate with community-based lived experience experts, have caused the spread of widespread misinformation. This misinformation is directly responsible for the costly development of burdensome clinical trials, failures in meeting trial recruitment goals, repelling community facing campaigns, and the expanding mistrust that exists between the community-based landscape and the biopharmaceutical industry. 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 when accurately represented, unlocks a 360° view of valuable community-based insights.
Who writes Living Rare Editorials?Living Rare Editorials are insightful articles written by Rare360 Living Rare Editorial Journalists, 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, a debilitating chronic condition, a life-altering disability, or as a neurodivergent person. 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 https://t.me/rareadvocacy; 3. Follow us on social media @RareAdvocacy (direct links found at the footer of each page).
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