Whether it’s finding new ways to engage global communities of patients in particular disease areas or providing better community healthcare, we at Patients Know Best are always astounded by the variety of projects our partners take forward which utilize the strength of patient-controlled medical records.
The important work done by our partners deserves to be showcased to the wider PKB community around the world and to generate conversation and collaboration across countries, communities and disease specialties.
Rare Genomics Institute (RGI) is an international nonprofit organization whose mission is to help families pursue personalized research projects for diseases not otherwise studied. They provide a cutting edge research network of technologies, physicians and scientists to families via crowdfunding capabilities.
There are about 250 million people globally who suffer from rare diseases and, because these diseases often affect such a small percentage of the population, little funding is dedicated to the researching them. RGI’s goals are to give these families clinical access, funding opportunities and personalized support. Even more amazing is that RGI is made up mostly of volunteers who are passionate about advocating for these families suffering from rare diseases.
Patients can sign up with RGI and get assigned a patient advocate who can help them access the right clinicians and scientists as well as help them with creating a personalized crowdfunding platform. These patients also get access to their PKB medical record where they can upload their genomic data as well as their medical history, symptoms and lab results. Researchers and scientists can then use the data to delve further into researching their disease.
RGI is currently heading in many different and exciting directions but one of their latest publicized initiatives is called Amplify Hope. This initiative is a new study aimed at determining how crowdfunding can promote scientific research to help rare disease patients.
Jimmy Lin, MD, PhD, MHS, President of the Rare Genomics Institute said:
I am excited to see how crowdfunding will not only help raise much needed funds to uncover the cause of a child’s illness, but also how it can educate an entire community about this latest revolution in medicine.
What does this mean?
If this strikes a chord with you, whether you are a patient, clinician, scientist or health professional, we would be happy to make an introduction for you or you can check them out at their website.