top of page
Woman in Wheelchair Drinking Coffee




71% of people living with at least one rare disease are 18 years of age or older.


In a joint collaboration between the Rare Advocacy Movement (RAM) and THE PLANNING SHOP (TPS), a survey was launched to uncover the various challenges of living with a rare condition as an adult. The launch of the survey itself triggered a community-wide discussion around transitionary care from pediatric to adult focused healthcare professionals, along with all of the various unrealistic societal expectations, biases and discriminatory practices that various Adults Living Rare are forced to navigate.


As a brief of the survey results were presented at the World EPA Congress on April 15, 2021 during the world's first Community-based Stakeholder (CBS) Collaboration Zone. 

The Adults Living Rare Initiative


The Adults Living Rare Initiative is a global effort to strengthen, protect and unify community-based activists and professionals that have a strong moral code and cognitive competency to work directly with various community-focused stakeholders, through the rare360 program.  

The Adults Living Rare Initiative has evolved into a dynamic community-based initiative dedicated to securing that the interests of the community-based landscape are met through the execution of mutually beneficial collaborative programs designed to address systemic barriers, healthcare injustices and the inequitable distribution of socioeconomic resources.


“THE RARE REALITY” is a symbolic video representation of the various dynamics that encompass the rare disease drug development ecosystem, from the community-based perspective. 

Developed by the Adults Living Rare Initiative for its video series, this extended version of “THE RARE REALITY” is a gift to the lived experience professionals of the rare disease community.

Living Rare Estate

The Living Rare Community


The Living Rare community, hosted by the Adults Living Rare Initiative, extends beyond the rare disease and medically complex communities into the neurodivergent and disability communities, uniting millions world-wide, under one virtual roof called RAM House, a virtual home for community-based activists. 

bottom of page