The Rare Advocacy Movement (RAM) is a rare disease patient advocacy network consisting of professional rare disease community leaders, experts and industry allies dedicated to protecting the interests of the rare disease community and the diverse rare disease people and families that belong to the community. RAM is focused on establishing a unified rare disease community amongst the already diverse real world rare disease landscape through the development of sustainable community enhancing programs, resources and opportunities, that have been dubbed RAM Collaborations. Each member of RAM has vowed to remain transparent, clarify misunderstandings and to ensure that the rare disease community is provided not only a seat at the table but a respected and valued voice as an equal rare disease stakeholder. It is imperative that community-based advocacy experts are treated as equal rare disease stakeholders within the therapeutic development continuum and that appropriate steps are taken to ensure that community insights are not misrepresented, miscommunicated nor filtered through misinformed lenses.
Rare Disease Stats:
Backed By Data
All of the following rare disease stats are backed by 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
The Rare Advocacy Movement is dedicated to clarifying misunderstandings and ensuring that the rare disease community is not misrepresented. Therefore, the above statistics, derived from 2019-2020 census and Orphanet Epidemiological data, recognize that the majority of people affected by rare diseases are adults (i.e. people 18 years of age and older). Thus, when referencing rare disease statistics, be sure that the statistics that you reference are derived from real data and is not derived from a skewed and/or biased perspective. All statistics distributed throughout the community should be traced to a scientific publication rooted in epidemiological fact. To learn more, please do not hesitate to contact us for a copy of the scientific publications used to derive RAM's Rare Disease Stats Backed by Data.
Rare Disease Stakeholder SNAPSHOT:
The 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 Guardians)
4. Patient Advocacy Organizations & Collaborative Groups
5. Pharmaceutical/Biotechnology Companies
6. Insurance Providers
9. Healthcare Providers
10. Service Providers (i.e. research organizations, specialty pharmacies, etc.)
11. Regulatory Agencies
12. Independent Consultants
The above listed groups of rare disease stakeholders consist of experts dedicated to exploring various collaborative opportunities within the rare disease therapeutic development ecosystem. While 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 treatments and cures to the market. For community-centric advocacy stakeholders, with a pulse on accurate community derived insights and perspectives, there is a basic understanding that all community-focused collaborations must be both mutually beneficial and sustainable. RAM is the only community managed, rare disease community advocacy network of experts, dedicated to unifying the diverse real world people of the world's rare disease ecosystem where all stakeholder perspectives are included and provided equitable access to resources and opportunities that enable the improvement of overall quality of life for all types of people affected by rare diseases.
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, some of which with dedicated landing pages, the RAM network has rapidly evolved to function as a Center of Insight and Collaboration for authentic, professional and comprehensive rare disease community-based insights. Content that perpetuates inaccurate references and misleading perspectives harm the greater community. For this reason, RAM has developed rare360, a RAM Collaboration that connects rare disease focused stakeholders authentically dedicated to developing trusted rare disease stakeholder connections and partnerships throughout the rare disease landscape. 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, chronically rare people and close friends all on a shared mission.
"A win for one is a win for us all." - the Rare Advocacy Collective Mindset
What is RAM?
RAM is a community-managed network comprised of dedicated rare disease advocacy experts, from all over the world, who support the efforts to understand the evolving rare disease advocacy landscape from the community's perspective and develop solutions that address ongoing issues that affect the community at large. RAM is focused on making sure the community's 360 perspective [which includes the perspectives of the person with a rare disease, the caregiver(s) or care partner(s) of a rare disease person, the sibling(s) of a rare disease person, the child/children of a rare disease person, etc.] is not ignored nor misrepresented. RAM is also the only organized rare disease effort that has brought community developed diversity, equity, inclusion (DEI) solutions to all twelve types of rare disease focused stakeholders to aid in removing the current silo that has resulted in the neglect of a majority of people living with a rare condition (i.e. rare disease adults and rare disease people of color).
RAM represents the pulse of the diverse rare disease advocacy community. Comprised of community mentors, fresh and seasoned community experts, and trusted members of industry who believe in the power of collaboration and empowering the development of the patient advocacy community sector in order to make the patient advocacy environment sustainable, each member of RAM has vowed to abide by the Code of Conduct for Membership.
RAM members are uniquely positioned to utilize the network's extensive expertise to identify collaborative solutions amongst the various interests and agendas that exist throughout the network of stakeholders within the rare disease landscape. RAM members function to serve the best interests of the overall rare disease community at large.
RAM welcomes all stakeholders who have a genuine desire to work with the community and an authentic respect for the concept of human-centric initiatives to generate and support an equitable inclusive culture within their respective organizations, companies and overall network. Please note that RAM membership is not required in order to participate and 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 rare disease community. RAM welcomes all rare disease focused stakeholders of whom have a genuine interest and authentic respect for the implementation of human-centric and sustainable initiatives to contact us.
RAM reserves the right to reject any collaboration request(s) and/or proposal(s) for any reason.