We are thrilled to announce that our grant in the Chan Zuckerberg Initiative – Rare As One will be extended for another year!
It’s hard to believe it has been 2 years since we were first selected as one of only thirty rare disease organizations to be a part of CZI – Rare as One. Over the past 24 months, we have soaked up all the knowledge, discussion, learning, and resources CZI had to offer as part of our grant—all with a singular focus, to provide MORE for our global patient community with a particular emphasis on RESEARCH. As an organization, we have put those resources to work and have made leaps and bounds to expand our international reach, convene our community towards patient driven research, and identify researcher-patient common priorities.
We are proud of the launch of our first Research Network which many of you have already participated. Having our patients drive research is something we have envisioned for years. Now, with the help of the Chan Zuckerberg Initiative, we have been able to see the Cure HHT Research Network come alive. We look forward to continued collaboration with CZI and our patients as we elevate patient-driven research to the next level.