Nelson's Story

Virtual Events in October

Mirum Research Study Blows Up

our content goes here. Edit or remove this text inline or in the module Content settings. You can also style every aspect of this content in the module Design settings and even apply custom CSS to this text in the module Advanced settings.

Related Posts

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...

Christina

Meet Christina! My name is Christina, I’m from London. I was diagnosed with ALGS when I was six after my ophthalmologist noticed both myself and my dad had abnormal eye structure. It turned out I’d inherited the condition from him, but neither of his parents had it....

The 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). The GALA study is led by Principal investigator, Dr. Binita M...

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.

Rare Disease Care

One of the key challenges in rare disease care is the limited understanding of these conditions. Many rare diseases are genetic or congenital, and research into their causes and potential treatments is often underfunded. Patients and their families frequently face diagnostic odysseys, enduring years of uncertainty before receiving a proper diagnosis.

Giving Program Testimony

“Our family had a very rough 2020, but my daughter had her heart set on a Christmas gift we simply could not afford. The Alagille Syndrome Alliance Giving Tree Program gave us the gift of seeing our daughter’s joy on Christmas morning as she opened it. Thanks to this program, the holiday for us was saved and we are eternally grateful.”

Mom to ALGS Young Adult

“The Alagille Syndrome Alliance financial assistance program literally brought me to tears. Tears of joy, that is. Feeling the caring and genuine concern from people who can relate is a tremendous relief. What an amazing connection the Alliance has provided to my son and me. Parenting a child with a chronic illness takes more resources. The emotional struggles with worry and stress about my son’s health and well-being has been overwhelming. Very often, a community of relatives and friends cannot understand the family dynamic that includes a child with a life threatening illness. This has caused isolation for my son and me. Holding it together financially has been close to impossible and shameful for falling short. We’ve learned to make due. When our oven broke, we switched to using a counter top oven. Our water bill was seriously overdue. Our old car that we rely on for medical appointments needed a new radiator. A conversation with Roberta at the ALGSA quickly put me at ease, lifting the feeling of financial shame and empowering me. This is the most uplifting connection I have made since my son was diagnosed over 10 years ago. The Alagille Syndrome Alliance embraced our needs and the response from the ALGSA for assistance is the most fullfilling experience that I’ve had in many years.”

Mom to ALGS young adult
Massachusetts, USA

ALGSA Symposium 2024

Come join other ALGS families at a fun and informative event. We have topics to fit every ALGS family from ALGS 101 to deep dives into the genetics of ALGS and current research on the disease.

Camden

Hello, we are the Johnson family. My name is Shanda, my husband is Colt, our 6-year-old ALGS warrior is Camden, and we have a 3-year-old son Crew.

Sammy

I am Heidi and my husband is Tim. We have two boys, Joseph is 3 and Sammy is 2. We live in Northern Utah. Sammy has Alagille Syndrome. We haven’t had genetic testing done, so we don’t know if Joseph does or if it came from either of us.

[dssb_sharing_buttons _builder_version=”4.20.4″ _module_preset=”default” saved_tabs=”all” global_colors_info=”{}” global_module=”7652″ theme_builder_area=”post_content”][dssb_sharing_button icon_color=”#FAF6F4″ icon_bg=”#8B94A7″ _builder_version=”4.20.4″ _module_preset=”default” share_font=”Times New Roman|600|||||||” share_font_size=”14px” border_radii_item=”on|6px|6px|6px|6px” border_radii_icon=”on|1px|1px|1px|1px” border_color_all_icon=”#8B94A7″ box_shadow_style_icon=”preset1″ box_shadow_blur_icon=”2px” box_shadow_spread_icon=”1px” box_shadow_color_icon=”#8B94A7″ global_colors_info=”{}” theme_builder_area=”post_content”][/dssb_sharing_button][dssb_sharing_button social_network=”twitter” _builder_version=”4.20.4″ _module_preset=”default” share_font=”Times New Roman|600|||||||” share_font_size=”14px” border_radii_item=”on|6px|6px|6px|6px” border_radii_icon=”on|1px|1px|1px|1px” global_colors_info=”{}” theme_builder_area=”post_content”][/dssb_sharing_button][dssb_sharing_button social_network=”linkedin” _builder_version=”4.20.4″ _module_preset=”default” share_font=”Times New Roman|700|||||||” share_font_size=”14px” border_radii_item=”on|6px|6px|6px|6px” border_radii_icon=”on|1px|1px|1px|1px” global_colors_info=”{}” theme_builder_area=”post_content”][/dssb_sharing_button][/dssb_sharing_buttons]

More News

Rare Disease Care

Rare Disease Care

One of the key challenges in rare disease care is the limited understanding of these conditions. Many rare diseases are genetic or congenital, and research into their causes and potential treatments is often underfunded. Patients and their families frequently face diagnostic odysseys, enduring years of uncertainty before receiving a proper diagnosis.

ALGSA Symposium 2024

Come join other ALGS families at a fun and informative event. We have topics to fit every ALGS family from ALGS 101 to deep dives into the genetics of ALGS and current research on the disease.