The Rare Advocacy Movement (RAM) is a global rare disease community-based network dedicated to protecting the interests of the real world rare disease community. RAM dedicated to establishing a unified rare disease advocacy ecosystem that is reflective of the already diverse real world landscape through the development of sustainable community enhancing programs, resources and opportunities, that have been dubbed RAM Collaborations. RAM is committed to transparency, the clarification of biases and misunderstandings and to establishing that the real world rare disease community is provided not only a seat at the table but a respected and valued voice as equal rare stakeholders to those that are industry-based. RAM's network of community-based experience experts are determined to be treated as equal stakeholders within the therapeutic development continuum and to ensuring that community-based insights are no longer misrepresented, miscommunicated, exploited nor filtered through misinformed lenses.
Rare Disease Stats:
Backed By Data
All of the following rare disease stats are derived from epidemiological data research (2019-2020):
There are about 362 million people living with a rare disease worldwide - 2019 Statistic
5% of the global population has a rare disease. The current world population is 7.7 billion. - 2020 Statistic
Worldwide, 29% of rare disease people are children. People under the age of 18 years are classified as children. - 2019 Statistic
Worldwide, 71% of rare disease people are adults. People 18 years of age and older are classified as adults. - 2019 Statistic
While 71% of people affected by a rare disease are adults, 70% of rare diseases are exclusively pediatric onset. This means, that most rare disease adults have been living with their rare condition since childhood. - 2019 Statistic
KNOW YOUR SOURCE
Reference the Rare Advocacy Movement when sharing the above statistics, derived from 2019-2020 epidemiological data.
Rare Disease Stakeholder SNAPSHOT:
The current rare disease network of stakeholders include:
1. The Patient Community
2. The Caregiver Community ( Parents and Parental Guardians)
3. The Care Partner Community (Spouses and other non-parental partnership roles)
4. Rare Disease Experience Experts (community-based professionals)
5. Patient Advocacy Organizations & Collaborative Advocacy Groups
6. Pharmaceutical/Biotechnology Companies
7. Insurance Providers
10. Healthcare Providers
11. Service Providers (i.e. research organizations, specialty pharmacies, etc.)
12. Regulatory Agencies
13. Industry-based Consultants
The above listed groups of rare disease stakeholders consist of professionals dedicated for a variety of reasons to exploring opportunities within the rare disease therapeutic development ecosystem. 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 stakeholders, with a pulse on accurate community derived insights and perspectives, there is a basic understanding that all collaborations must be both mutually beneficial and sustainable. RAM is the only community managed, rare disease experience network of experts, dedicated to unifying the naturally diverse people of the real world rare disease ecosystem where all varieties of stakeholder perspectives are included and provided equitable access to resources and opportunities.
Why is it so important to understand and identify the groups that make up each rare disease community's network of stakeholders?
It is important to understand which stakeholder group you are working with. While there may be shared goals amongst stakeholders, each group consists of varying, and often rapidly evolving, perspectives, agendas, and motivations.
At times, different agendas may not align and conflicts of interests may arise. 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.
Through the development of several RAM Collaborations, the RAM network has rapidly evolved to function as a Center of Insight and Collaboration Zone for authentic, professional and comprehensive rare disease community-based relationship building. Content that perpetuates inaccurate references and misleading perspectives harm the greater community. For this reason, RAM has developed rare360, a program hosted by the Adults Living Rare Initiative. If you are interested in collaborating with and/or joining the efforts of the Rare Advocacy Movement, please do not hesitate to Contact Us.
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 a professional network of mothers, fathers, husbands, wives, brothers, sisters, aunts, uncles, cousins, medically complex people and close friends all on a shared mission.
"A win for one is a win for us all." - the Living Rare Collective Mindset
What is RAM?
RAM is a global community-managed network comprised of dedicated rare disease experience experts, who support the efforts to understand and support the evolving real world rare disease ecosystem from the community's perspective and develop sustainable solutions that address ongoing issues that affect the community at large.
RAM is focused on making sure the community's 360° "Living Rare" perspective is not neglected nor misrepresented. The 360° "Living Rare" perspective includes:
the person with at least one rare disease,
the caregiver(s) of a person with a rare disease (any parent or parental guardian of a person with a rare disease)
the care partner(s) of a rare disease person (i.e. sibling(s), adult child/children of a parent with a rare disease, spouse of a person with a rare disease, etc.)
RAM is also the only organized rare disease effort that has brought community developed diversity, equity, inclusion (DEI) solutions to all thirteen types of rare disease focused stakeholders to aid in resolving the current silo that has resulted in the neglect of rare disease adults, rare disease people of color and rare disease people of the lower socioeconomic classification.
RAM represents the pulse of the real world rare disease advocacy community. Comprised of both advocacy leaders and community-based experience experts who believe in the power of collaboration and empowering the development of a sustainable rare disease advocacy landscape, each member of RAM has vowed to abide by the Code of Conduct for Membership.
Contributors to RAM's initiatives agree to mutual confidentiality and an overarching commitment to serving the needs of the global rare disease community, as opposed to seeking opportunities for exclusive self-gain. RAM welcomes all professionally competent stakeholders who have a genuine desire to work with and on-behalf of the community. In order to fit into the RAM network, each stakeholder must have an authentic respect for the concept of human-focused initiatives designed to generate and support an equitably inclusive culture within their respective organizations, companies and overall network.
Please note that RAM membership is not required to participate or contribute to a RAM Collaboration. If you see a RAM Collaboration that interests you, do not hesitate to connect with us or to discuss potential collaborative launches of other community-focused initiatives.
InteresteD in Proposing a RAM collaboration?
RAM believes in embracing a collaborative approach to identifying and addressing ongoing issues faced by the diverse people of the rare disease community. RAM welcomes all rare disease focused stakeholders authentically interested in the implementation of human-centric and sustainable strategies and initiatives to contact us.
RAM reserves the right to reject any collaboration request(s) and/or proposal(s) for any reason.