Science in Society: Rare As One Network Meeting

The GLUT1 Deficiency Foundation has had the good fortune to be part of the Chan Zuckerberg Initiative (CZI) Rare As One Network since we were selected as a grantee in the first group of 30 organizations invited to be part of Cycle 1 in 2020.

The goal of the Rare As One Project has been to establish a patient-led collaborative research network to drive progress for treatments and cures, but CZI understands that it takes a lot of capacity for an organization to do this work – capacity in the form of not only funding, but also skills, experiences, processes, staffing, and tools to make the work possible.

It has been a transformational experience for the G1DF, and while the funding has been important, it is also the learning and training opportunities we’ve had not only from CZI but from the other rare disease organizations who are part of this network. It is an incredibly giving and collaborative community, and we have all gained so much by being part of it.

Our funding from CZI ended in 2023 and it helped make a lot of great things possible. We continue to be engaged in the Rare As One Network, though, and were delighted to be invited as guests of CZI to attend the 2025 Science in Society meeting held May 27th through May 30th in Las Vegas, Nevada. Executive Director Glenna Steele and Science Director Sandra Ojeda represented the G1DF.

It was a chance to catch up with some of the Cycle 2 grantees who have been involved in many of the same initiatives and work groups we have, and it was also an opportunity to welcome the new Cycle 3 grantees in person and get to know more about them, their diseases, and their work. There are nearly 100 rare disease organizations now in the Rare As One Network. It is a diverse group of organizations both in types of diseases represented, the age and maturity level of the organizations, and the skills and experiences they’ve had and can share with others.

The meeting was inspirational and motivating with new urgency recognized in this work we are all doing to improve lives in our disease communities. The clear message and lesson being modeled again and again is that we can all do so much more through collaboration and all of our efforts should be led by what matters most to patients. These are two core values we put into practice each day here at the G1DF, and we will continue working to build that ethos in the research community as well – our Research Workshop this summer is another big milestone in that work.

We are thankful for the opportunities to stay engaged with the Rare As One Network, especially with the launch now of disease class groups including channelopathies, ciliopathies, and our home group – inborn errors of metabolism – where we can continue to find overlaps and synergies for our work to make research easier, faster, and more focused on patients. We have formed other informal work or support groups as well with diseases from all three cycles where we have shared interests, shared science, shared needs, and even shared potential treatments.

It is an exciting time, and we had the chance on the last day of the meeting to have “Blue Sky” discussions to dream about where rare disease research will be in 10 years and how much easier and better life will be for patients and families. CZI Science is helping put a lot of tools in place that will help make some of those dreams a reality, and they are equipping organizations like ours to work better, more effectively, and more sustainably for the communities we serve.