For the first issue of Future Rare Diseases, the journal’s Launch Editor, Rhiannon Finnie, spoke with Christian Rubio, Vice President of Strategic Advancement at Global Genes (CA, USA).
For the first issue of newest partner journal, Future Rare Diseases, the journal’s Launch Editor, Rhiannon Finnie, spoke with Christian Rubio, Vice President of Strategic Advancement at Global Genes (CA, USA). Global Genes is a global non-profit advocacy organization working to connect and empower individuals, and their family members, of the rare disease community.
In the interview, Rubio discusses the challenges faced by someone in the rare disease community on their journey to correct diagnosis and treatment. Some factors include lack of awareness, which contributes to an absence of research into a specific disease. In some cases, disparity and lack of presence of participant data from underserved communities in clinical trials also impacts understanding of a disease. Little understanding of a disease then inevitably means less information is available to guide clinicians in how to assist these patients.
Global Genes is on a path and committed to helping arm patient advocacy organizations with the tools, data-centric planning capabilities and strategies to become 21st century organizations and agents of change in the research and care of rare disease patients.”
Rubio continues by describing how Global Genes is working to address these disparities in clinical trials through their partnerships and programs. Such diversity is imperative for gaining better knowledge and understanding of rare diseases and helps progress treatment development and discovery.
Future Rare Diseases is a peer-reviewed journal recently launched by Future Medicine Ltd. The aim of the journal is to provide a fully OPEN ACCESS resource for all those working in the field, including scientists, clinicians, policy makers and patient advocates, to share knowledge and provide increased exposure to the vital work being carried out in the research into rare diseases, their diagnosis and the development of treatments.
We are currently waiving all open access fees for articles published in Future Rare Diseases. If you are interested in submitting a manuscript for consideration, please contact Rhiannon Finnie ([email protected]).