The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM is a cultural awakening facilitated by dedicated advocacy leaders who have vowed to remain transparent, clarify misunderstandings and to ensure that the rare disease community is not overlooked, ignored or misrepresented.
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 children have a rare disease. People under the age of 18 years are classified as children. - 2019 Statistic
Worldwide, 71% of adults have a rare disease. 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
Unfortunately, there are several incorrect rare disease statistics circulating throughout the rare disease landscape. Most of these "fake stats" have become deeply embedded into the fabric of the rare disease ecosystem, being referenced by several rare disease stakeholders without verification of the data points upon which the statistic were originally developed.
The Rare Advocacy Movement is dedicated to clarifying misunderstandings and ensuring that the rare disease community is not misrepresented. Therefore, the above statistic, derived from 2019-2020 data sets, effectively debunk the following commonly dictated "fake stat," stating that 50% of known rare diseases affect children. Assuming children are all people that are under the age of 18, this statistic has been officially debunked by both census and Orphanet Epidemiological data. It is time to 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 diseases statistics, be sure that the statistics that you reference are derived from real data and rooted in epidemiological fact. To learn more, please do not hesitate to contact us for all of the references 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
5. Pharmaceutical/Biotech 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 those community-centric advocacy stakeholders, with a pulse on key community derived insights and objectives, there is a basic understanding that all collaborations must be mutually beneficial. RAM is the only community managed, rare disease patient advocacy, network of experts, dedicated to maintaining an authentic rare disease ecosystem where all stakeholders have inclusive and equitable access to opportunities that enable valuable collaborations with like-minded advocacy experts and professionals dedicated to improving the overall quality of life for all types of people affected by rare diseases. Click here to learn more about current RAM Collaborations.
Why is it so important to understand and identify the groups that make up the rare disease 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 consist 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 working groups to truly be effective.
RAM is to serve as a community managed Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease landscape. If you are interested in collaborating and/or consulting with the advocacy leaders of the Rare Advocacy Movement, please do not hesitate to Contact Us.
Today’s rare disease community is several million strong, united worldwide to discover and bring 7000+ rare disease treatments and cures to the market for loved ones. We are a professional network of mothers, fathers, 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.
What is RAM?
RAM is a community-managed network comprised of dedicated rare disease advocacy experts who support the effort to understand the evolving rare disease advocacy landscape from the chronically rare person, caregiver/care partner, sibling, offspring communities, and other rare disease stakeholder perspectives.
RAM represents the pulse of the rare disease patient advocacy leadership. Comprised of community mentors, fresh opinion leaders, and trusted members of industry who believe in the power of collaboration and empowering the development of the patient advocacy industry, each member of RAM have vowed to abide by the Code of Conduct for Membership.
RAM members are uniquely positioned to utilize years of experience to identify mutually beneficial solutions amongst the various interests and agendas that exist throughout the network of stakeholders within the rare disease space.
RAM welcomes all stakeholders who have a genuine understanding and respect for the concept of patient-centric initiatives to generate and support an equitable person-focused culture within their respective organizations, companies and overall network.
Connect with us to discuss potential collaborative launches of community-focused projects within your organization.
InteresteD in being considered for RAM?
RAM is a network of rare disease leaders and experts dedicated to the growth and advancement of, not only their own disease specific communities but, the overall rare disease community. RAM welcomes all rare disease focused stakeholders of whom have a genuine understanding, interest and respect for the implementation of person-centric initiatives to complete and submit a RAM Application for membership or a RAM Collaboration Proposal.
RAM reserves the right to reject any application(s) and/or proposal(s) for any reason.