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

Frequently asked questions

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, they do not hesitate to partner. RAM is honored to have several allies contributing and supporting the network. Historically, those who claim to be advocacy allies, but do not collaborate with community-based 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 real world community and the biopharmaceutical industry. Each person "Living Rare" (i.e. the person with a debilitating rare condition, the caregiver and/or the care partner), 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 community-based articles written by a RAM member or a RAM contributor. Upholding RAM's moral code of conduct, each Living Rare Editorial represents the authentic perspectives, insights and experiences (PIE) of the real world rare disease 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, be sure to join to our mailing list (found at the footer of each page) and follow us on social media @RareAdvocacy.