Odylia Therapeutics is excited to announce a new partnership with the PURA Syndrome Foundation (PSF), a nonprofit whose mission is to support and drive research, raise awareness in the general community, as well as connect, educate, serve, and empower families impacted by PURA syndrome worldwide. Through this partnership, Odylia will evaluate the current state of research and clinical progress towards treatments for people with PURA Syndrome and provide scientific and strategic guidance to the Foundation. Odylia’s work will enable PSF to deploy their resources to effectively seek out new and better treatments, as well as develop short- and long-term research strategies.

PURA syndrome (PS) is a neurodevelopmental disorder that causes moderate to severe developmental delays and learning disabilities. The spectrum of PS symptoms includes movement difficulties, seizures, difficulty feeding or breathing, low muscle tone, and excessive fatigue, among others. Currently, there is a lack of treatments for PS and there are no evidence-based consensus management guidelines for PS. Treatment and management are based on an individual’s specific symptoms. To learn more, please visit https://purasyndrome.org/.

Odylia Therapeutics has expertise in both preclinical and clinical drug development for rare diseases. In addition to Odylia’s gene therapy pipeline, Odylia partners with rare disease patient groups to address the needs of each group depending upon the stage of development and the level of support needed. Patient groups interested in learning more about Odylia Therapeutics’ Brydge Solutions services should email info@odylia.org.

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info@odylia.org

About Odylia Therapeutics

Odylia is a nonprofit biotech focused on bringing life-altering and lifesaving treatments to those with rare diseases. We have expertise in both preclinical and clinical drug development for rare diseases. Our vision is to change how drugs are developed for rare diseases by focusing on the science and patient needs, rather than the commercial potential. We partner with the patient communities, researchers, clinicians, and financial donors to bring promising therapeutics to clinical trials. In addition to our gene therapy development pipeline, we partner with rare disease patient groups, early-stage gene therapy companies, and academic researchers and tailor our work to meet the needs of each group depending upon the stage of development and the level of support needed through our Brydge Solutions program. Patient groups, companies, and researchers interested in learning more about Odylia Therapeutics’ services should contact us at info@odylia.org. For additional information, visit https://odylia.org, and follow us on LinkedIn.

About Brydge Solutions

Odylia partners with rare disease communities to deliver a new generation of innovative therapies for rare diseases through the Brydge Solutions program. By providing patient advocacy organizations, industry, and academic partners with expertise in rare disease research, drug development, and program management, Odylia empowers partners and provides the resources to help groups maintain momentum and control over their interests. These partnerships range in scope from deliverable-based landscape analyses, long-term, ongoing scientific guidance, and portfolio management, as well as operational and financial insights to accelerate growth.