Amplifying and Diversifying the Patient Voice

March 9, 2020

We all know the importance of patient participation in clinical trials. Aside from receiving potentially curative therapies, increased patient engagement is critical for gaining access to comprehensive medical conclusions. Additionally, the more people that are involved in clinical trials, the more patient diversity we hope to see. In order to get an accurate picture of rare diseases, more researchers have begun to work towards expansion and inclusivity.

In the spirit of comprehensive data, The U.S. National Library of Medicine is looking to hear from people who have used their digital resource If you’re a researcher, patient, or physician that has engaged with this site when looking for research or clinical trials, now is the chance to have your voice heard. This survey will remain open until March 14, 2020. One aspect of creating more inclusive clinical trials is allowing access to a broader audience. You can contribute to the global conversation by providing input on how to improve the user experience.

Getting involved in these clinical trials can be overwhelming if you’re new to the rare disease world. To gain a deeper understanding of what it means to be dealing with a rare disease, finding support groups, expanding your knowledge, and accessing the correct resources are often some of the first steps people take. The Global Genes’ RARE List offers all this, as well as a chance to add your own disease if it is not yet included. Contribute further to the pooling of information and diversifying of rare disease data by adding information on your disease and engaging.

Patient participation and inclusive data-gathering has become a priority within many different facets of the rare disease community, and most certainly in the drug development process. Looking forward, Global Genes CEO Kimberly Haugstad heartily agrees and states that 

“our goal is to be the platform that ensures all patients have the tools and resources they need for the best quality of life possible. Truly doing this successfully means we deeply and passionately commit to partnerships and convening experts where needed. No one group can do this alone with the depth and breadth of our global population, but together we will.”

To further expand patient understanding and involvement in the drug development process, the RARE Drug Development Symposium in Philadelphia places emphasis on educating and empowering patients to find their voice, while connecting them with stakeholders. As another tool used to empower patient involvement in drug trials and research, these connections can help create a more patient-focused drug development community. 

“As we continue to advocate for the rare disease community and grow our understanding of these diseases, it is important to include stories from every corner of the rare disease world. Doing so begins with increased participation and feedback from members of the community,” said Haugstad. “Advocacy, at its most basic level, is connecting with and educating people about our experiences and about the needs of others.” 

Help to build a more wholesome view of rare diseases by offering your insight and expertise to people working towards improving our future.

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