SynBio For Rare Diseases

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


ActivityDate
Policy Whitepaper - First DraftJuly 2024
Policy Whitepaper - Public ReleaseSeptember 2024
Speaker Series LaunchTBA
3-Day BioHackathonTBA
note

Recruitment is currently closed! You can connect with us on Slack for more information!

Organizers


Neha Suresh
Neha Suresh
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Project Head
Raleigh, NC, United States of America
Shakirah Namuli
Shakirah Namuli
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Ambassador - Africa, Project Member
Kampala, Uganda
Sasha Thomas
Sasha Thomas
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Ambassador - Asia & Oceania, Project Member
Bangalore, India
Sumohit Sharma
Sumohit Sharma
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Project Member
Stuttgart, Germany
Adhelia Intan Sabhira
Adhelia Intan Sabhira
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Indonesia, Sleman, Yogyakarta
Argyris Dallis
Argyris Dallis
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Greece, Larissa
Aadee Shekhar Malavade
Aadee Shekhar Malavade
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India, Bhopal
Abobakr Soltan
Abobakr Soltan
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Egypt, Alsharqia
Riyaa Kedar Ganla
Riyaa Kedar Ganla
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India, Mumbai
Tumusiime Jacob
Tumusiime Jacob
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Uganda, Kampala
Maria Boubia
Maria Boubia
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Canada, Quebec
Jimena Reyes
Jimena Reyes
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Mexico, Querétaro
Katerina L. Pramandioti
Katerina L. Pramandioti
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Greece, Patras
Javaria Zafar
Javaria Zafar
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Pakistan, Lahore
Jina Bae
Jina Bae
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United States, Los Angeles