DISCOVER COMMUNITY-BASED INSIGHTS

LIVING RARE EDITORIALS

"THE EXPERIENCE OF LIVING RARE IS ONE THAT YOU CANNOT POSSIBLY UNDERSTAND WITHOUT EXPERIENCING IT YOURSELF." -

Founding Member of RAM

Published February 28, 2021

The first Community-Based Stakeholder Collaboration Zone will be taking place at the WORLD EPA CONGRESS in April, 2021.

Published January 25, 2021

Composed by the "Our Lives Matter" DEI Initiative

Published December 15, 2020

Composed by the Adults Living Rare Initiative

Frequently asked questions

Why Living Rare Editorials?


It has become a common understanding across the rare disease landscape 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. Authentic allies understand that they cannot accurately represent nor interpret, the 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 chosen to 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 content, and the growing mistrust that exists between the real world community and the advocacy environment. Each person "Living Rare" (i.e. the person with a debilitating rare condition, the caregiver and/or the care partner), all possess valuable perspectives that when accurately represented, unlocks a 360° view of valuable community insights. Authentic, community-based insights of the "Living Rare" experience cannot be comprehensive until all "Living Rare" perspectives are respectfully represented (ideally with the expert guidance of a rare360 expert) and evaluated without the historical application of misinformed industry-based filters.




Who writes Living Rare Editorials?


Living Rare Editorials are articles, often unsigned, written by rare360 experts active in either a RAM collaboration or a RAM community-based initiative. Upholding RAM's moral code of conduct, each Living Rare Editorial speaks from the authentic source 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.





 
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The Rare Advocacy Movement (RAM) is a novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community.  RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source. Each RAM member has made a public vow to always act in the best interest of the rare disease community by abiding by the Code of Conduct for Membership. Those who violate the Code of Conduct for Membership risk removal from the RAM membership and access to the global network via majority vote.