The Rare360 Editorial Team
- May 31, 2023
- 4 min
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The Rare Advocacy Movement (RAM) is the first community-based network dedicated to protecting the interests of the global community of people living with rare conditions, chronic & progressive disabilities, medical complexities and their families. RAM represents a unified rare disease patient and carer ecosystem that works through specialized collaborations, across the globe, to address the mutual needs of the patient and carer community, from the community-based perspective. RAM is committed to transparency, the empowerment of patients and their families living with chronic rare diseases, the correction of harmful systemic biases and assumptions, the dissolution of siloed patient-dedicated resources and the removal of harmful bottlenecks from the rare disease ecosystem. RAM's goal is to pave a community-based path for people living with rare medical conditions to have equitable access to the opportunity to thrive.
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400 million people are living with or are suspected of havING a rare disease worldwide
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5% of the global population has a rare disease.
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29% of rare disease people are children.
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71% of rare disease people are adults.
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70% of rare diseases are exclusively pediatric onset; which means, most rare disease adults have been living with at least one rare condition since childhood.
Living Rare Editorials
Rare Disease Stakeholder SNAPSHOT
The rare disease ecosystem consists of 12 different stakeholders:
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The Patient Community
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The Caregiver Community (Parents and Parental Guardians)
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The Care Partner Community (Spouses and other non-parental partnership roles)
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Community-based Activists and Organizations
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Advocacy-based Non-profit Organizations/Charities
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Pharmaceutical/Biotechnology Companies
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Insurance Providers
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Researchers/Scientists/Academia
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Healthcare Providers
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Industry Service Providers (i.e. clinical research organizations, commercial-phase consultants, etc.)
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Regulatory Agencies
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Pharmacies (medication dispensaries/distributors)
The above list of stakeholders are dedicated to exploring opportunities within the rare disease therapeutic development ecosystem, for a variety of reasons. While the theme of patient-centricity is often at the core of each exploratory discussion, each rare disease focused stakeholder's primary objective tends to center around bringing safe and effective therapeutic treatments to the market. For community-based activists within the RAM network, there is a grassroots expectation that all collaborations be mutually beneficial and sustainable. RAM is dedicated to unifying the community-based landscape with sincere community-focused advocates sincerely determined to develop accessible resources, services and opportunities for patients and their families.
Why is it so important to understand and identify which landscape you are working within, partnering with or seeking services from?
There are 4 identified landscapes that encompass the rare disease ecosystem (1. Academic, 2. Advocacy, 3. Industry and 4. Community). It is important to understand which rare disease landscape you are working within, partnering with or seeking services from because, while there may be shared goals amongst stakeholders, each group consists of different, and often rapidly evolving, perspectives, agendas, and motivations.
At times, different agendas may not align and conflicts of interests occur. Because each stakeholder's perspective is unique and not always understood by members of other stakeholder groups, when collaborating, a member from each stakeholder group must be actively present for focus groups to truly be effective, inclusive and comprehensive. Beyond inclusive stakeholder engagement, it is vital that each stakeholder contributing to the development of strategies are community-focused.
Through the deployment of various community-focused RAM Collaborations, RAM functions as a community-based stakeholder collaboration network for diverse rare disease community-based relationship building.
Content that perpetuates inaccurate assumptions and misleading biases harms community relationships and disrupts the process of developing treatments and cures. For this reason, RAM has developed rare360, a novel, sustainable RAM partnership program.
Community Voice
Today’s rare disease communities are several million strong, united worldwide to discover and bring 7000+ rare disease treatments and cures to the market for themselves and loved ones. We are the real world, naturally diverse, network of people Living Rare, mothers, fathers, husbands, wives, brothers, sisters, aunts, uncles, cousins, neurodivergent people, people with visible and invisible disabilities, and closely allied friends and partners all on a shared mission of empowerment.
"Nothing About Us Without Us." - the Living Rare Community
We are Rare.
RAM is a decentralized community-managed organization of dedicated rare disease, lived-experience experts, collectively focused on evolving the global healthcare ecosystem and empowering the patient and carer communities. RAM is the world's first functional rare disease focused Decentralized Autonomous Organization (DAO).
RAM is focused on making sure the inclusion of the Living Rare community's Perspectives, Experiences, and Insights (P.I.E.) are not neglected nor misrepresented within the academic, advocacy and industry landscapes. RAM defines "Living Rare" as the following:
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the lived experiences of a person with a chronic, symptomatic rare medical condition (also referred to as "the patient").
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the lived experiences of the caregiver(s) of a person with a chronic and/or debilitating rare medical condition (a caregiver is also referred to as a parent or parental guardian).
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the lived experiences of the care partner(s) of a person with a chronic and/or debilitating rare medical condition (a care partner does not serve a parental/guardian role to the patient. A care partner can be a sibling, a spouse, a romantic partner, a platonic house-mate, etc. who serves as the patient's primary support person)
Through the OLM DEI Initiative, RAM offers community-based diversity, equity, inclusion (DEI) solutions tailored to guide all twelve types of rare disease focused stakeholders in addressing institutionally re-enforced silos that have negatively impacted people of color within the rare disease community.
WE UNDERSTAND the pulse of the real world patient & Carer communitIES BECAUSE WE ARE LIVING RARE Ourselves.
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