Organizzazione in primo piano: The Rare Advocacy Movement (RAM)
Il Rare Advocacy Movement (RAM) è una rete di leadership della comunità delle malattie rare focalizzata sull'affrontare le questioni che riguardano le persone reali della comunità globale delle malattie rare.
La rete RAM va a beneficio dei pazienti rari promuovendo collaborazioni tra gli stakeholder delle malattie rare, tra cui l'industria sanitaria, il mondo accademico, i gruppi di sostegno e la stessa comunità dei pazienti rari. L'obiettivo di queste collaborazioni è quello di identificare e affrontare problemi specifici e continui affrontati dalle diverse persone della comunità delle malattie rare. RAM opera secondo l'idea che "una vittoria per uno è una vittoria per tutti". La rete sta lavorando attivamente per eliminare la competizione tra gli stakeholder delle malattie rare e sostituirla con unità, collaborazione, professionalità e supporto.
RAM Collaborations have resulted in the development of a variety of novel, community-oriented programs, resources, and opportunities for the global rare community. Some ongoing collaborations are described below.
The “Our Lives Matter” Diversity, Equity, and Inclusion (DEI) Initiative offers a collection of customizable DEI programs designed to guide rare disease-focused organizations interested in understanding and addressing the needs and concerns of the diverse rare disease and chronic disability communities. Developed by community-based experts, these DEI programs cover clinical trial diversity and inclusion, equitable distribution of resources and opportunities, fair and equitable drug development, and diverse and inclusive content development. The initiative is the result of a partnership between the Rare Black Lives Matter Too team (a RAM collaboration launched in May 2020) and New Love Ventures (a private philanthropic organization). RAM encourages all rare disease stakeholders to participate. For more information, visit https://www.rareadvocacymovement.com/ourlivesmatter.
The "Collaborate for Rare Lives" Survey was created to eliminate bottlenecks to progress in bringing treatments and cures for rare diseases to market. RAM encourages all patient advocacy leaders and nonprofit group founders to participate in the survey, which is designed to identify hurdles and build bridges among community-based stakeholders. Insights gathered will be used to raise awareness of the challenges faced by patient advocacy leaders serving the rare patient community. To take the survey, visit https://www.rareadvocacymovement.com/patient-advocacy-community-dynamics.
Let’s Face This Together offers free zebra-themed facemasks for rare children. RAM partnered with Same But Different, a UK-based nonprofit, to expand their UK free mask distribution program to benefit children in the United States. All US children with a diagnosed or undiagnosed rare condition are eligible (one free mask per household). To learn more and/or to request a free mask, visit https://www.rareadvocacymovement.com/freefacemasks
The rare360 Program aims to connect trusted industry-based stakeholders with rare disease advocacy experts who can provide guidance based on real-life experience in the rare community. The goal is to develop mutually beneficial working relationships that reflect genuine needs, perspectives, and insights from rare patients. To qualify for the highly selective rare360 program, industry-based collaborators must demonstrate an authentic dedication to improving rare lives by developing trusted relationships in the rare disease community. The program is hosted by the Adults Living Rare Initiative.
Do you have an idea for a RAM Collaboration? To learn more, visit https://www.rareadvocacymovement.com.
