"THE EXPERIENCE OF LIVING RARE IS ONE THAT YOU CANNOT POSSIBLY UNDERSTAND WITHOUT EXPERIENCING IT YOURSELF." -
- Founding Member of RAM
It has become a common understanding across the rare disease landscape that the "Living Rare" experience can only be authentically known by the people with a debilitating rare condition, their caregivers, and/or their care partners.
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. True allies understand that they cannot accurately speak to the rare disease experience. Historically, those who have claimed to be allies speaking and advocating on behalf of those authentically "Living Rare" have caused the spread of misinformation. This misinformation is directly responsible for the costly development of burdensome clinical trials, failures in meeting trial recruitment goals, out-of-touch community facing content, and the growing mistrust that exists between the community and the biopharmaceutical industry. Additionally, community-based caregivers and care partners understand that they cannot speak to the experience of having a debilitating rare condition and vis versa.
Each person "Living Rare" (i.e. the person with a debilitating rare condition, the caregiver and/or the care partner), all possess a key perspective that when accurately connected, unlocks rare360 community insights. Authentic, community-based insights of the "Living Rare" experience cannot be comprehensive until all "Living Rare" perspectives are respectfully obtained (ideally with the expert guidance of a rare360 expert) and evaluated without the historical application of misinformed industry filters.
Living Rare Editorials are articles, often unsigned, written by rare360 experts active in the rare disease advocacy ecosystem. Upholding RAM's moral code of conduct each Living Rare Editorial speaks to the voices, motivations and aspirations of the rare disease advocacy community.
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Published December 15, 2020