71% of the real world rare disease community 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 summary of the survey results are being organized into a publication to be published on this page, the Adults Living Rare collaboration has effectively evolved into a global initiative.


The Adults Living Rare Initiative


The Adults Living Rare Initiative is a global effort to strengthen, protect and unify community-based advocacy experts that have a strong moral code and professional competency to work directly with various rare disease-focused stakeholders, as representatives of the community-based ecosystem.  

The Adults Living Rare Initiative has evolved into a dynamic landscape of professional rare disease experience experts that are prepared to develop mutually beneficial collaborative relationships with industry-based rare disease stakeholders, always working on behalf of the best interests of the community-based ecosystem.

The real world Living Rare community, housed within the Rare Advocacy Movement, extends beyond the rare disease advocacy community, representing over 320 million global rare disease experiences, perspectives, aspirations and dedication. 


Interested in learning more about the real world Living Rare community? Be sure to sign up to attend the World EPA Congress. During the Community-based Rare Disease Collaboration Zone, the Adults Living Rare Initiative will be unveiling RAM's virtual estate, during a set of presentations by community-based advocacy experts. You do not want to miss this. For those who cannot attend the World EPA Congress, be sure to subscribe to RAM's Youtube Channel to receive the notifications of new video uploads. All community-based Living Rare people, community-focused stakeholders and allies are invited to the Living Rare Afterparty! RSVP by Clicking Here. Your chance to RSVP closes on April 12th, 2021. 

The rare360 Program

The Adults Living Rare Initiative has officially acquired rare360, a protective novel program that is designed to connect comprehensive community-based advocacy experts with trustworthy industry stakeholders who authentically understand the value that authentic community-based insights provide to the therapeutic development industry. Interested in learning more? Contact us.

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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.