The Rare Black Lives Matter Too team consists of rare disease advocates of color from the Rare Advocacy Movement (RAM) and expert contributors from both the community and pharmaceutical industry. Specializing in rare disease, disability and complex medical case community dynamics, the Rare Black Lives Matter Too team has organized a call to action for the nonprofit advocacy sector, the pharmaceutical and biotechnology sector, and the clinical medical healthcare sector. As a unit, the Rare Black Lives Matter Too team has partnered with New Love Ventures to establish the "Our Lives Matter" DEI programs. DEI stands for diversity, equity, inclusion.
The "Our Lives Matter" DEI programs are currently available to rare disease industry and community stakeholders authentically interested in establishing the development of diverse and inclusive clinical trial participation, equitable distribution of resources and opportunities, fair and equitable therapeutic regimen development for all varieties of people, diverse and inclusive content development and the establishment of a culture of inclusion and acceptance of all types of people irrespective of any given or acquired differences. All rare disease stakeholders are encourage to participate.
Members of the Rare Advocacy Movement (RAM) have teamed up with Same but Different to distribute 500 Zebra themed face masks to rare disease children located in the United States. The Zebra themed face masks are free of charge. All you have to do is request one for your rare kiddo!*
Members of the Rare Advocacy Movement (RAM) have organized to conduct an international analysis of the patient advocacy community leadership dynamics in establishing siloed territories within patient advocacy communities and to obtain insights on the effects of conflicts between groups over obtaining control over community territories, to guide discussions towards the development of practical unifying solutions.
A community-based program developed in collaboration with New Love Ventures designed to address address retention and recruitment issues commonly faced in the digital health industry, while protecting the interests of the people of the rare disease community. Only vetted comprehensive rare disease advocacy experts and digital health platforms will have the opportunity to enroll and partner, respectively. rare360 is a program designed to protect the best interests of the people of the rare disease community, while providing valuable insights that expedite the collection of data sets that drive the development of therapeutic products and other solutions that improve overall quality of life. Not every digital health platform will qualify to partner with the rare360 program. Subsequently, not every rare disease patient advocacy leader qualifies as a comprehensive rare disease expert.
The Rare Advocacy Movement (RAM) and The Planning Shop (TPS) have teamed up to gain a better understanding of what the rare disease landscape looks like in the U.S. for adults aged 18 and over. This survey will generate useful data which RAM and TPS will use in a number of campaigns to help inform public discussions about rare diseases, and raise awareness of the challenges that adults living with rare conditions face on a daily basis.
The FAIR MARKET VALUE OF RARE DISEASE INSIGHTS RAM Collaboration aims to establish a sustainable patient advocacy ecosystem by equipping the rare disease expert community with contract templates, access to mentorship, and the fair-market value (FMV) ranges for the various types of experts in the rare disease community. As market trends fluctuate, the resources made available through this RAM Collaboration are regularly updated. All resources are offered to the rare disease community as guidance towards developing sustainable agreements.
The Rare Advocacy Movement (RAM) and ThinkGen teamed up to research and document the relevance of rare disease advocacy expertise in clinical trial design and the potential consequences of non-inclusion.