Trusted Member of Rare360

A Trusted Member of Rare360

The Valux Digital team is proud to announce that we have been accepted into Rare360. Rare 360 is a Rare Advocacy Movement (RAM) program dedicated to strengthening, protecting and unifying community-based rare disease patients, their families, allied patient advocates and community focused stakeholders.

The Rare Advocacy Movement (RAM) is a rare disease community leadership network focused on addressing issues that affect the real-world people of the global rare disease community. Rare360 is a program hosted by the Rare Advocacy Movement (RAM). Designed to connect all four landscapes across the rare disease ecosystem, Rare360 makes it possible for community-focused stakeholders to develop trusted community-based relationships.

Rare360 is a prestigious honor, exclusively available to trusted companies. In order to qualify for Rare360 partnership with RAM, stakeholders must participate in a collaboration or initiative dedicated to improving the lives of patients and their families.

Furthermore, Rare360 services accelerate the development of accessible, life improving treatments for rare diseases, establishing a win-win for people living with rare diseases and the biopharmaceutical organizations involved in discovering and developing rare disease therapies.

Valux Digital Becomes a Trusted Member of Rare360!

"The Rare Advocacy Movement (RAM)'s mission through Rare360 is to unite trusted leaders from every industry across the healthcare ecosystem, to create a specialized, community-dedicated network that works to empower people living with rare diseases and to develop sustainable global infrastructures that provide people living with debilitating rare diseases the opportunity to thrive.

Rare360 is a prestigious honor, exclusively available to trusted companies. Through Valux Digital's extensive experience in pharmaceutical, healthcare and biotechnological digital media, it is our pleasure to welcome Valux Digital as a Rare360 partner.

Valux Digital has proven itself to bring valuable digital media support to RAM's global network and we look forward to continuing the work of improving the lives of patients and their families on a global scale."

The Rare360 Program

“We are very excited to be able to work with Valux Digital,” said Nadia Bodkin, founder of the Rare Advocacy Movement, the first community-based decentralized autonomous organization dedicated to the best interests of people diagnosed with rare diseases and their families. “Our mission at RAM is to unite trusted leaders from every industry across the healthcare ecosystem, to create a specialized, community-dedicated network that works to empower the people of the global rare disease community and develop sustainable infrastructures that provide people living with debilitating rare diseases the opportunity to thrive.”

Rare Advocacy Movement

The Rare Advocacy Movement (RAM)

About RAM

The Rare Advocacy Movement (RAM) is the first community-based network dedicated to protecting the interests of the global community of people living with rare conditions, chronic & progressive disabilities, medical complexities and their families.

 

RAM represents a unified rare disease patient and carer ecosystem that works through specialized Rare360 collaborations, across the globe, to address the mutual needs of the patient and carer community, from the community-based perspective.

 

RAM is committed to transparency, the empowerment of patients and their families living with chronic rare diseases through the correction of harmful biases and assumptions, the dissolution of siloed resources and the removal of harmful bottlenecks from the rare disease ecosystem. RAM’s goal is to pave a community-based path for people living with rare medical conditions to have equitable access to the opportunity to thrive.

The Community

360 million people are living with or are suspected of having a rare disease worldwide.

 

  • 5% of the global population has a rare disease.
  • 29% of rare disease people are children.
  • 71% of rare disease people are adults.
  • 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.

 

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 people Living Rare, mothers, fathers, husbands, wives, brothers, sisters, aunts, uncles, cousins, neurodivergent people, people with visible and invisible disabilities, and closely allied friends and partners all on a shared mission of empowerment.

 

“Nothing About Us Without Us.” – the Living Rare Community

The Rare Disease Ecosystem

The rare disease ecosystem consists of 12 different stakeholders:

  • The Patient Community
  • The Caregiver Community (Parents and Parental Guardians)
  • The Care Partner Community (Spouses and other non-parental partnership roles)
  • Community-based Activists and Organizations
  • Advocacy-based Non-profit Organizations/Charities
  • Pharmaceutical/Biotechnology Companies
  • Insurance Providers
  • Researchers/Scientists/Academia
  • Healthcare Providers
  • Industry Service Providers (i.e. clinical research organizations, commercial-phase consultants, etc.)
  • Regulatory Agencies
  • Pharmacies (medication dispensaries/distributors)

 

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.

About Rare360

Rare360 is a program developed by the Adults Living Rare Initiative. Designed to connect community-focused stakeholders dedicated to developing trusted community-based relationships, rare360 requires the Perspectives, Insights & Experiences (PIE) of people living with rare diseases or caring for a person with a rare condition be valued (reference RAM’s Fair Market Values for Rare Disease Insights).

A prestigious and exclusive partnership program, only thoroughly vetted organizations qualify to become rare360 partners. Industry, academic and advocacy based stakeholders who qualify for a rare360 partnership must be community-focused and sincerely dedicated to improving the lives of patients, carers and their families through respect and by upholding the established fair market value of lived-experience experts and advisors of the rare disease ecosystem.

We are proud to be a trusted member of Rare360!

Valux Digital offers brands around the world scalable and sustainable growth strategies. Digital and data experts at Valux help organizations complete digital transformations and build data-centric digital infrastructures. In its profound mission, the company provides high-quality digital marketing and technology solutions to businesses of all sizes and types.

We are committed to supporting the rare disease community through our expertise in data intelligence and digital trends based on our experience in pharmaceuticals, healthcare, and biotech.

We are honored to be selected to share our expertise as a partner with Rare360, Rare Advocacy Movement (RAM)!

Valux Digital

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