Welcome to
ALGSA
Welcome to the Alagille Syndrome Alliance (ALGSA), a prominent and compassionate 501c3 nonprofit organization dedicated to serving individuals, caregivers, and families impacted by Alagille Syndrome (ALGS) on a global scale.
At ALGSA, we stand at the forefront of the fight against ALGS, tirelessly working to provide invaluable support, resources, and a sense of community to those facing this rare and challenging genetic disorder. Our mission is deeply rooted in enhancing the lives of patients and their loved ones, and we do so with unwavering commitment and expertise.
Our worldwide network of individuals and families affected by ALGS is the heart of our organization. Together, we strive to raise awareness, foster connections, and promote cutting-edge research aimed at better understanding and treating ALGS. With the power of collaboration and shared experiences, we are building a brighter future for everyone touched by this condition.
Join us in our mission to empower, educate, and advocate for individuals with ALGS. Together, we can make a significant difference in the lives of those affected by this rare disorder, offering hope, knowledge, and a supportive community that will endure for generations to come.
News
ALGSA Connection
Our Partners
What We Do
- Family & Caregiver Support
- Advocacy & Awareness
Advocacy and awareness of Alagille Syndrome is so important. Efforts in advocacy and awareness help improve legislature, increase science and research funding, advance scientific understanding of ALGS, educate communities, families, and greatly improves funding opportunities that urgently supports families around the world. Let us help you understand what opportunities are available and what might fit your needs with the time you have. Giving back to this community is such a wonderful gift.
- Science & Research
We are deeply involved in science and research initiatives for Alagille Syndrome. The ALGSA has a large ALGSA Collaborative Scientific Research Grant, supports the Global ALagille Alliance, has a 3-way Cooperative Research And Development Agreement (CRADA) with Travere Therapeutics and NCATS/NIH, and are involved in many other initiatives. We are eager to meet scientists and researchers working in the field, have the ability to help in many ways, and offer opportunities for scientists and researchers to meet families, engage in the community, and at events.
- Family Conference & Events
Events for families, industry partners, physicians and medical professionals, and scientists and researchers can be life changing. Many patients and families affected by ALGS have never met another family in-person and many scientists and researchers working in Alagille Syndrome do not get the opportunity to communicate with families or physicians about ALGS. Here at the ALGSA, we offer opportunities for all stakeholders to attend events, participate as speakers, meet families, share their work, and learn about Alagille Syndrome.
Family Stories
Patients and families affected by Algille Syndrome are The Heart of all we do at the ALGSA. Individual and family stories have significant purpose and bring value in many ways.
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Testimonials
Upcoming Events
Young Adult Retreat
Young Adult Retreat
This Essential Health Young Adult Retreat is for adults affected by ALGS ages 18 – 30 yrs old. Hosted by the ALGSA, this event will be held near Detroit, MI, and have distinguished facilitators including Dr. David Piccoli, world-renowned ALGS expert, and Dr. Al Fr...