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¡Bienvenidos a la segunda SEMANA GLOBAL DE CONCIENTIZACIÓN SOBRE SDS! Esta página le brinda acceso a todas las grandes iniciativas de la comunidad SDS: grupos de defensa de pacientes SDS y familias de superhéroes SDS de todo el mundo.

La comunidad eligió una fecha para que coincidiera con el 25 de abril, que era el cumpleaños del Dr. Harry Shwachman. Dres. Shwachman y Diamond jugaron un papel decisivo en la definición del síndrome de Shwachman-Diamond con su histórica publicación en la revista Pediatrics en 1964, titulada "El síndrome de insuficiencia pancreática y disfunción de la médula ósea".

Esperamos que más y más organizaciones y familias participen con el tiempo para que esta campaña pueda crecer y llegar a más familias y proveedores médicos.

La sensibilización puede salvar vidas. Cualquier diagnóstico realizado antes disminuye la carga y el sufrimiento de la odisea del diagnóstico, y las intervenciones para salvar vidas pueden comenzar antes. La comunidad SDS puede crecer para apoyar investigaciones más específicas, acelerando el paso hacia terapias y curas.

Si tiene preguntas sobre algún evento o campaña en particular, comuníquese directamente con la organización anfitriona o la familia. Las donaciones a cualquiera de las organizaciones de SDS son siempre bienvenidas y apreciadas. Visite sus respectivos sitios web para más detalles.

Si es un paciente de SDS o una familia que busca organizaciones locales de apoyo, consulte la lista en el sitio web de SDS Alliance, aquí . Puede encontrar información general sobre SDS para pacientes y familias aquí .

Global SDS Awareness Day and Action Week (November)

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Shwachman-Diamond Syndrome (SDS) overview with a graphic of hands building a Lego structure together. is caused by typos in the DNA that prevent enough ribosomes from forming in cells. Ribosomes are huge protein complexes that make all proteins in our cells by assembling amino acid chains,
like hands building towers of Lego blocks.
With too few ribosomes working,
the cells cannot make enough
protein - one of the major
building blocks of life
- including enzymes we
need to live and thrive.
That’s why SDS affects
multiple organ systems.

Shwachman-Diamond Syndrome SDS common symptoms, illustrated with a Lego figure and organ system symbols: Graphic overview of common symptoms of SDS Shwachman-Diamond Syndrome symptoms illustrated on a Lego figure outline with symbols for organ systems invloved such as brain and cognitive issues, Digestive and pancreas issues, Skeletal issues and small stature, immune deficiency and neutropenia, bone marrow failure, low blood counts, high risk of developing MDS, AML, blood cancer, leikemia and resrouces available at the SDS Alliance www.SDSAlliance.org

Resources available at the Shwachman-Diamond Syndrome Alliance / SDS Alliance: Free testing, information, community, action. Graphics includes a pink hearts made with Legos.

Infographic consisting of three sections: An overview, a common symptoms strategy, and resources at the SDS Alliance website wwww.sdsalliance.org. Shwachman-Diamond Syndrome (SDS) overview with a graphic of hands building a Lego structure together. is caused by typos in the DNA that prevent enough ribosomes from forming in cells. Ribosomes are huge protein complexes that make all proteins in our cells by assembling amino acid chains,
like hands building towers of Lego blocks.
With too few ribosomes working,
the cells cannot make enough
protein - one of the major
building blocks of life
- including enzymes we
need to live and thrive.
That’s why SDS affects
multiple organ systems. Shwachman-Diamond Syndrome SDS common symptoms, illustrated with a Lego figure and organ system symbols: Graphic overview of common symptoms of SDS Shwachman-Diamond Syndrome symptoms illustrated on a Lego figure outline with symbols for organ systems invloved such as brain and cognitive issues, Digestive and pancreas issues, Skeletal issues and small stature, immune deficiency and neutropenia, bone marrow failure, low blood counts, high risk of developing MDS, AML, blood cancer, leikemia and resrouces available at the SDS Alliance www.SDSAlliance.org

Media Kits & Downloads

Global SDS Awareness Day and Action Week (November)

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