Laura Badmaev to attend 2025 Rare Drug Development Symposium

We’re proud to share that ARRE Foundation Founder and Chair, Laura Badmaev, will be attending the Rare Drug Development Symposium, hosted by Global Genes in Boston, MA, this September.

This annual gathering brings together leaders from across the rare disease ecosystem, including researchers, industry partners, regulatory experts, and advocacy organizations, to focus on advancing meaningful treatments for rare conditions. For our ASXL community, it’s a critical space to raise awareness, build relationships, and ensure that the unique challenges of ultra-rare disorders like Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2), and Bainbridge-Ropers Syndrome (ASXL3) are part of the conversation. We’ve attended this meeting many times in the past, and it has been invaluable for learning how small patient advocacy organizations like ours can build a roadmap to therapeutics.

Laura will attend on behalf of the ASXL Rare Research Endowment (ARRE) Foundation, representing our community’s voice and deepening connections with others working to move research forward. As a mother to Alex, who lives with Bohring-Opitz Syndrome, Laura brings a personal and deeply informed perspective to this work, which is shaped by lived experience, a background in systems engineering and strategic development, and her commitment to improving care and outcomes for families navigating ASXL-related disorders.

Whether she’s connecting with drug developers or advocating for earlier diagnosis and research funding, Laura’s presence ensures that our community’s needs are seen and heard.

We look forward to sharing key takeaways from the symposium this fall.

Learn more about the Rare Drug Development Symposium: https://globalgenes.org/rare-drug-development-symposium-2025/