Nelson's Story

The ALGS Awareness Ribbon


The Alagille Syndrome Alliance awareness ribbon for ALGS reflects the significantly complex and uniquely varying severity of the disease throughout our ALGS community. This ribbon recognizes those affected by just a few organ systems and those affected by all organ systems. It is our hope that we can unite, relate and empower everyone dealing with ALGS, either mild or severe, and bring together those with significant organ representation who may not focus on ALGS as a whole but rather the organ system most affected. We want our ALGS heart families, ALGS liver families, kidney families, vascular families and others struggling through their diagnosis to know we are here fighting for them. We want to impress on our community that Alagille Syndrome cannot be treated as one single problem. Together, we can find a cure through researching each organ system and supporting families who relate more to one significantly affected system. Our new ALGS awareness ribbon is meant to encourage our ALGS families, scientists, researchers and donors and show the world that we cannot be separated by symptom but rather united by uniqueness. YELLOW – for the liver and digestive system RED – for the heart and circulatory system GREEN – for the kidneys and renal system BLUE – for the lungs and pulmonary system PURPLE – for the brain and vascular system CREAM/PEARL – for the skeletal system As Alagille Syndrome affects so many systems, we want to spread the word to other communities. Our research can help others with quicker diagnosis and access to better treatments. If you are a part of any organizations or groups serving these communities, please share our information. Together we can find better treatments and a cure for ALGS and other associated diseases! Stand with us, and be #ALGSAware!
[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.