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The Rare Advocacy Movement (RAM) is the first community-based network of professional activists and allied advocates dedicated to protecting the interests of the global community of people living with rare conditions, disabilities, medical complexities and their families. RAM is dedicated to establishing a unified rare disease ecosystem of community-based and community-focused stakeholders working together to expedite the development of and access to therapies and cures through inclusive programs, accessible resources and equitable opportunities (i.e RAM Collaborations). RAM is committed to transparency, the correction of harmful assumptions, the dissolution of silos and the removal of bottlenecks from the rare disease ecosystem. The global Living Rare community's voice has unified to demand respect and to be treated as valuable stakeholders in the therapeutic development industry. As a result, RAM's network is collaborating with trusted allied stakeholders to streamline the therapeutic development process through real world community-based programs and initiatives.

 
 
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Rare Disease Stakeholder SNAPSHOT
The rare disease ecosystem consists of 12 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 Non-profit Organizations/Charities 

  6. Pharmaceutical/Biotechnology Companies

  7. Insurance Providers

  8. Researchers/Scientists/Academia

  9. Healthcare Providers

  10. Industry Service Providers (i.e. clinical research organizations, commercial-phase consultants, etc.)

  11. Regulatory Agencies

  12. 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, disability, chronic illness and autism community-based relationship building.

Content that perpetuates inaccurate assumptions and misleading biases harms community relationships and disrupts the therapeutic development process. For this reason, RAM has developed 
rare360, a program developed in collaboration with Rare Love Ventures and other community-focused legal entities.

Rare Disease Stats
  • 362 million people are living with a rare disease worldwide. - 2019

  • 5% of the global population has a rare disease. - 2020 

  • 29% of rare disease people are children.  - 2019

  • 71% of rare disease people are adults. - 2019 Statistic

  • 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. - 2019 

REFERENCE: ORPHANET & US CENSUS

2019
2020

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Living Rare EditorialS

 
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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 the real world, naturally diverse, network of medically complex people, mothers, fathers, husbands, wives, brothers, sisters, aunts, uncles, cousins, neurodiverse 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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We are Rare.

RAM is a global community-managed network comprised of dedicated rare disease, disability, chronic medically complex, neurodivergent activists and lived-experience experts, who support the efforts to understand and support the evolving real world healthcare ecosystem from the community's perspective, developing sustainable solutions that address ongoing issues that affect the people of the community. 

 

RAM is focused on making sure the community's 360° perspective is not neglected nor misrepresented. The 360° "Living Rare" perspective includes:

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

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

  3. the care partner(s) of a person with a chronic life-altering medical condition (care partners are committed romantic or platonic 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, other romantic partner, etc.) 

 

RAM is also the only organized community-based network that has developed 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.

RAM represents the pulse of the real world patient & Carer communitIES

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

In addition to all RAM Members vowing to abide by the Code of Conduct for Membership, RAM's network consists of a unified group of global community-based activists, lived experience experts, and community-focused advocacy allies, all of whom have a special interest in solving issues within rare disease, disability and neurodiverse communities.

There are simple rules to maintain RAM Membership. For those who designate themselves as former RAM Members, please note that being a former member does not suggest any knowledge of or access to the current network.  

Additionally, being a RAM Member does not automatically grant an activist or advocate access to an existing RAM Collaboration. 

 

Finally, 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.
 

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