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Research

The ALGSA is dedicated to improving the lives of patients and families affected by Alagille Syndrome and accelerating scientific research aimed at (a) understanding how ALGS affects different organ systems, (b) finding treatments, (c) improving outcomes, and in the process adding quality of life for ALGS warriors and their families. As well as leading our own science and research initiatives, we partner with academic and industry researchers, and clinicians working in Alagille or related fields. We are committed to helping advance research and therapeutics development for ALGS, and provide our partners with diverse types of support to help them achieve their goals.

In our partnerships, we do not shy away from problem-solving or getting creative and we always respect confidentiality needs. We wholeheartedly value and foster relationships that open the door for collaboration, knowledge sharing, and networking. Please email us anytime to discuss ideas and current needs at karstenb@alagille.org.

Types of support offered include:

  • Scientific Research grants
  • Formal partnership with ALGSA to enhance projects and initiatives
  • NIH Grant support letters
  • Speaking opportunities
  • Networking opportunities
  • Seeking out resources
  • Providing patient voice
  • Patient recruitment

Our research partners:

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

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 advocate and raise awareness for patients and families and the ALGSA. Q. What is your relationship to...
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Scientific Meeting on Alagille Syndrome and Research Round Table Event

The International Symposium on Alagille Syndrome event is in-person every other year and virtual in the off years. While in-person, we take the opportunity to bring together brilliant minds in Alagille Syndrome.
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Research Partners

Global ALagille Alliance (GALA) Study

The Global ALagille Alliance (GALA) Study is a global initiative to create an international database of clinical, genetic, and laboratory data in children and young adults with Alagille Syndrome (ALGS). 

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Cooperative Research And Development Agreement (CRADA)

ALGS Publications and Texts
There are many great publications and resources pertaining to Alagille Syndrome. We can’t possibly list every one but want to list a vast array of topics under the Alagille Syndrome umbrella to get you started.

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ALGSA Collaborative Scientific Research Grant

In 2019, the ALGSA developed the ALGSA Collaborative Scientific Research Grant, a 2-year, $150,000 award, given $75k annually, to one scientist, researcher, or clinician studying Alagille Syndrome.

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ALGSA Scientific Research Grants

Through the years, the ALGSA has funded small scientific research grants to scientists and researchers working in Alagille Syndrome and will continue to fund small research grants as funding allows.

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ALGS Sanford CoRDS Patient Registry

In 2018, the ALGSA partnered with Coordination of Rare Diseases at Sanford (CoRDS) to establish the Alagille Syndrome Patient Registry. Based at Sanford Research in Souix Falls, SD, this free centralized international registry is the perfect actionable step for families affected by ALGS to help advance science in the field right from the comforts of home.
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