Alagille Syndrome Alliance

The Alagille Syndrome Alliance (ALGSA) is a nonprofit organization working to find a cure for Alagille Syndrome (ALGS), a rare genetic disease that affects an estimated 1 in 30,000 live births worldwide. We work closely with scientists, researchers, clinicians, pharmaceutical companies, and other industry partners to cultivate interest in ALGS discovery and encourage the development of better treatments. We connect families to financial and other assistance, disease related educational resources, opportunities to share their story, participate in scientific projects, and connect with other families. Equally important, we facilitate connections that accelerate the ALGSA mission while allowing families to engage directly with stakeholders in a powerful effort to keep the patient voice at the forefront of all we do. We are committed to maintaining strong relationships and collaborations with these same stakeholders to support understanding the deep complexities and mysteries of ALGS which we feel will lead to new studies and treatments, and improve those currently in existence. Central to everything we do, our mission inspires us to strive for excellence in all facets of our work within the ALGSA and in the wider world. 

 

“Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.”

 

 

Condition Awareness & Advocacy

Here is a list of conditions this partner raises awareness and advocacy for: 

Resources & Support

Patient Worthy Posts on Alagille Syndrome