We are UNITED in the FIGHT!

Join us May 1 – June 15 as we FIGHT for a Better Life for Alagille Syndrome families. Set up a team or support the FIGHT today!

Alagille Syndrome
Alliance

Our worldwide network of individuals and families affected by ALGS is the heart of our organization

Support Alagille Syndrome Awareness with Style!

Discover our exclusive collection of clothing and merchandise, where every purchase contributes to raising awareness and supporting those affected by Alagille syndrome. Show your solidarity and make a difference with each stylish item you choose.

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

Team Small but Mighty – Importance of Patient and Family Involvement in Fundraising Initiatives Q & A

by | May 14, 2024 | ALGSA | 0 Comments

Learn why ALGS Mom, Erin Hasselberg Lucca, participates in the Fight for a Better Life campaign each year and how she views working in partnership as a parent to...

Our Partners

What We Do

  • Family & Caregiver Support
The ALGSA is focused on ensuring patients, caregivers, and families affected by ALGS have critical resources, educational materials, and opportunities to make living a life with Alagille Syndrome easier. We offer support in many ways nationally and internationally, and encourage and help all ALGS families to build a solid support system, better understand ALGS, meet other families, particpate and come to events, and know where critical resources are along the way.
  • 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.

Family & Caregiver Support
  • 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.

Science & Research
  • 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 Conference & Events

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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Family

Testimonials

Upcoming Events