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The Rare Advocacy Movement (RAM) is the first community-based network of professionals dedicated to protecting the interests of the global community of people living with rare conditions and their carers. RAM is dedicated to establishing a unified rare disease ecosystem of community-based and community-focused stakeholders working together to bring therapeutics to the community through sustainable community-based programs, equitably accessible resources and inclusive opportunities (i.e RAM Collaborations). RAM is committed to transparency, the clarification of biases and the removal of bottlenecks from the rare disease ecosystem. The year of 2021 marks the year in which the global community's unified voice is demanding respect, to be valued and to be treated as equal stakeholders to those that are industry-based. As a result, RAM's network is working with trusted industry stakeholders to streamline the therapeutic development process through real world community-based insights.

 
 
Rare Disease Stats:
Backed By Data
All of the following rare disease stats are derived from epidemiological data
  • 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

  • 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 from Orphanet.

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Rare Disease Stakeholder SNAPSHOT:
The current rare disease ecosystem consists of the following 13 different stakeholders: 

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. Community-based Activists and Organizations

5. Advocacy-based Organizations

6. Pharmaceutical/Biotechnology Companies

7. Insurance Providers

8. Researchers/Scientists

9. Academia

10. Healthcare Providers

11. Industry Service Providers (i.e. research organizations, specialty pharmacies, etc.)

12. Regulatory Agencies

13. Industry-based Consultants

The above list of stakeholders found across the rare disease ecosystem 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 comprehensive community-based professionals, with a pulse on accurate community perspective, insights and experiences (PIE), there is a basic understanding that all collaborations must be both mutually beneficial and sustainable. RAM is dedicated to unifying the community-based landscape with all community-focused stakeholders authentically determined to develop equitably 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?

It is important to understand which landscape you are working within because, 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 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 development of several RAM Collaborations, the RAM network has rapidly evolved to function as a community-based stakeholder collaboration model for comprehensive rare disease community-based relationship building. Commercial content that perpetuates inaccurate references and misleading perspectives harm community relationships and disrupt the therapeutic development process. 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.

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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 medically complex people, mothers, fathers, husbands, wives, brothers, sisters, aunts, uncles, cousins, neurodivergent people, people with disabilities, and closely allied friends all on a shared mission. 

"A win for one is a win for us all." - the Living Rare mindset

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The Living rare estate
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What is RAM?

RAM is a global community-managed network comprised of dedicated rare disease, disability, chronic medically complex, neurodivergent activists and experience experts, who support the efforts to understand and support the evolving real world healthcare 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:

  1. the person with a chronic medical condition (i.e. rare condition, permanent disability, neurodivergent traits, etc.).

  2. the caregiver(s) of a person with a chronic medical condition (a caregiver is a parent or parental guardian).

  3. the care partner(s) of a person with a chronic medical condition (care partners are committed life partners that do not serve a parental guardian role to the person with a chronic medical condition. A care partner can be a sibling, a spouse, a long-term live-in roommate, etc.) 

 

RAM is also the only organized community-based network that has developed diversity, equity, inclusion (DEI) solutions to all thirteen types of rare disease focused stakeholders to aid in resolving the current silos that have resulted in the neglect, abuse and trauma of people of color Living Rare and other people living with disabilities.

 

RAM represents the pulse of the real world patient community. Comprised of community-based activists, lived experience experts, and community-focused allies who believe in the power of collaboration and empowering the development of a sustainable patient advocacy ecosystem, in order to be allowed to enter the Member's Lobby, you must vow to abide by the Code of Conduct for Membership.

The Member's Lobby provides each member with accessibility to develop RAM Collaborations.

RAM Membership does not automatically grant access to RAM HOUSE. RAM HOUSE is an exclusive server available only to community-based activists and condition-specific experience experts actively involved in an existing RAM Collaboration. As a result, RAM Membership is not required to participate or contribute in any RAM Collaboration. If you see a RAM Collaboration that interests you, please do not hesitate to connect with us or to discuss the development of other potential collaborations.

InteresteD in Proposing a RAM collaboration?

RAM believes in embracing a collaborative approach to identifying and addressing ongoing issues faced by the naturally diverse people of the real world patient community. RAM welcomes all community-focused stakeholders authentically interested in developing mutually beneficial collaborations to contact us.

 

RAM reserves the right to reject any collaboration request(s) and/or proposal(s) for any reason.