Organizational Memberships2018-05-01T21:08:13+00:00


The ALGSA serves an international community and participates as a member in many national and international organizations. These memberships enable us to stay informed of the latest events and initiatives in rare disease, connect with other organizations and individuals with mutual interests for partnerships and collaborations, and raise the profile of Alagille Syndrome and the ALGSA around the world. Listed here are some of our organizational memberships and we will add more as we continue to expand our reach and broaden our services to serve the global ALGS community.

Active Memberships:
• American Association for the Study of Liver Disease (AASLD)[https://www.aasld.org] Associate Member

• Canadian Organization for Rare Disorders (CORD)[https://www.raredisorders.ca] Member
• Drug Information Association (DIA)[https://www.diaglobal.org] Member
• Everylife Foundation for Rare Disease[https://everylifefoundation.org] Community Congress, Regulatory Committee Member
• Friends of NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases)[https://www.niddk.nih.gov/about-niddk] Member
• Global Genes[https://globalgenes.org] RARE Foundation Alliance Member
• National Organizations for Rare Disorders (NORD)[https://rarediseases.org] Member Organization
• Nonprofit Association of Oregon[https://nonprofitoregon.org] Member
• Portlandia Club[http://portlandia.org] Member
• Rare Voices Australia[https://www.rarevoices.org.au] Member
• Rare Diseases Europe (EURORDIS)[https://www.eurordis.org] Associate Member
• Willamette Valley Development Officers[https://wvdo-or.org] Member

Pending Memberships:
• None at this time.

Other Affiliations:
Childhood Liver Disease Research Network (ChiLDReN)[https://childrennetwork.org]
Children’s National Rare Disease Institute Advocacy Committee[https://childrensnational.org/departments/rare-disease-institute]
Patient Centered Outcomes Research Institute (PCORI), Rare Disease Advisory Panel (RDAP)[https://www.pcori.org]


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