Rare Focused

PUBLICATIONS

RAM is a network of community-based professionals, experts, activists and vetted community-focused allies that have made a public vow to always place the best interests of the naturally diverse rare disease patient community first. Misinformation and fabricated insights are extremely damaging to the people of the rare disease community.
 
RAM's network is dedicated to correcting misinformation, fabricated "insights" and to providing guidance to community-focused stakeholders interested in obtaining accurate community-based insights and guidance for a truly comprehensive understanding of the rare disease ecosystem.

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The following is a comprehensive list of reports, white papers, guidances and more from various agencies located within the rare disease ecosystem that RAM's network has found to be helpful and informative.

Reports, White Papers & More from sources not affiliated with the Rare Advocacy Movement.

  • Caregiving in the US 2015 Report - National Alliance for Caregiving *Note: This Report does not differentiate between the "caregiver" role and the "care partner" role. Caregivers serve a parental guardian role to the recipient. Care partners do not serve as parental guardians, but rather as committed life partners to the recipient. It is important to recognize and acknowledge the difference between the two types of relationships.​

  • Defining patient centricity with patients for patients and caregivers: a collaborative endeavour - an Open Access article attempting to develop a consistent definition of patient centricity and its associated principles in order to provide the biopharmaceutical industry with a clearer understanding as to how to adopt and use appropriate reference points for consistent patient engagement throughout the product life cycle. *Note: This article focuses more on establishing that patient-centric relationships must be developed rather than establishing how to establish appropriate patient-centric partnerships. This article attempts to place patient-centric programs into a neat box with predetermined algorithms misleading the biopharmaceutical industry into thinking that patient-centric relationships don't require the implementation of a value system in exchange for community-based insights. The Rare Advocacy Movement's Community-based Stakeholder (CBS) Collaboration model is a real-world model that proves its value-based system works and simultaneously corrects misinterpretations and misinformation regarding patient-centric protocols, campaigns and programs from the patient and carer perspectives.

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