About
The project spearheads community building efforts to accelerate solutions for rare diseases, driving technology innovation through biohackathon collaboration while also pressing for policy reform through patient advocacy that brings urgency to unlocking life-changing treatments.
How are iGEM Teams Using Synthetic Biology for Tackling Rare Diseases | Rare Diseases Day 2024
Description
Our mission is to build an engaged community that harnesses synthetic biology approaches to address challenges facing rare disease patients and families. We believe synergizing the lived experience and data resources from the rare disease community with emerging bioengineering technologies offers immense promise for both further demystifying and treating these conditions.
Through a biohackathon and speaker events, as well as generating policy and patient education resources, we aim to responsibly accelerate equitable progress.
Activities
BioHackathon
The BioHackathon will bring together patients, caregivers, clinicians, synthetic biology researchers, and bioengineers to tackle challenges facing the rare disease community using emerging engineering approaches. Through an intensive, collaborative process, participants will:
- Explore problems and data resources identified by rare disease communities
- Brainstorm creative synbio solutions and experimental frameworks
- Develop scopes and protocols for pilot projects leveraging tools like CRISPR, gene synthesis, microfluidics
- Pitch ideas to clinician/researcher advisors
Tracks:
- Pediatric cancers
- Neurological Diseases
- Metabolic disorders
- Bioinformatics solutions
Speaker Series
Stay tuned for the list of virtual speakers, dates and RSVP links!
Policy Whitepaper
This iGEM Community-driven whitepaper will analyze the current policy ecosystem influencing rare disease research, diagnostics, and treatment development in the United States. It will examine emerging capabilities in synthetic biology and associated ethical considerations.
Finally, it will offer recommendations on responsible policy approaches, incentives structures, and public-private partnerships needed to harness synthetic biology's immense potential to transform understanding of underlying mechanisms and accelerate equitable progress for rare disease patients and families.
Timeline
Activity | Date |
---|---|
Policy Whitepaper - First Draft | July 2024 |
Policy Whitepaper - Public Release | September 2024 |
Speaker Series Launch | TBA |
3-Day BioHackathon | TBA |
Recruitment is currently closed! You can connect with us on Slack for more information!