What is SDS:

Shwachman-Diamond Syndrome

What is SDS:

Shwachman-Diamond Syndrome

Description & Symptoms

Shwachman-Diamond syndrome (SDS) is an inherited rare disease that affects many parts of the body, particularly the bone marrow, pancreas, and skeletal system. As a bone marrow failure disorder, it puts patients at high risk of life-threatening complications such as serious infections (sepsis), aplastic anemia, myelodysplastic syndrome (MDS), and acute myeloid leukemia (AML). There is no cure or targeted treatments for SDS thus far, and we need better treatment options, now!

We estimate that about 2000-3000 people have SDS in the United States, and a similar number in Europe, many of them un- or misdiagnosed. Exact numbers are not available, due to the difficulties with diagnosis and tracking. This number is based on an estimated incidence of SDS of 1:70,000 live births and shortened life expectancy (median in the mid-40s).

Description & Symptoms

Shwachman-Diamond syndrome (SDS) is an inherited rare disease that affects many parts of the body, particularly the bone marrow, pancreas, and skeletal system. As a bone marrow failure disorder, it puts patients at high risk of life-threatening complications such as serious infections (sepsis), aplastic anemia, myelodysplastic syndrome (MDS), and acute myeloid leukemia (AML). There is no cure or targeted treatments for SDS thus far, and we need better treatment options, now!

We estimate that about 2000-3000 people have SDS in the United States, and a similar number in Europe, many of them un- or misdiagnosed. Exact numbers are not available, due to the difficulties with diagnosis and tracking. This number is based on an estimated incidence of SDS of 1:70,000 live births and shortened life expectancy (median in the mid-40s).

What is SDS:

Shwachman-Diamond Syndrome

Description & Symptoms

Shwachman-Diamond syndrome (SDS) is an inherited rare disease that affects many parts of the body, particularly the bone marrow, pancreas, and skeletal system. As a bone marrow failure disorder, it puts patients at high risk of life-threatening complications such as serious infections (sepsis), aplastic anemia, myelodysplastic syndrome (MDS), and acute myeloid leukemia (AML). There is no cure or targeted treatments for SDS thus far, and we need better treatment options, now!

We estimate that about 2000-3000 people have SDS in the United States, and a similar number in Europe, many of them un- or misdiagnosed. Exact numbers are not available, due to the difficulties with diagnosis and tracking. This number is based on an estimated incidence of SDS of 1:70,000 live births and shortened life expectancy (median in the mid-40s).

COVID-19 Resources

SDS Events - Global

NEW DATE March 2021! 10th International Congress on Shwachman-Diamond Syndrome

Mar 22, 2021, 6:00 AM – Mar 25, 2021, 12:00 PM

Cambridge, UK, Cambridge, UK

This Congress is held every other year in different locations throughout Europe and North America. It is the only scientific congress dedicated to Shwachman-Diamond Syndrome.

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Fun-Run-Walk October 2020

Oct 24, 7:00 AM EDT – Nov 01, 11:00 PM EST

Virtual run/walk, location of your choice

It's finally here: the first ever virtual global fun run/walk event to support Shwachman-Diamond Syndrome (SDS) research! www.SDSAlliance.org/steps

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Postponed. New Date TBD. SDSF Family Conference at Camp Sunshine (ME, USA)

Jul 12, 2:00 PM EDT – Jul 16, 10:00 AM EDT

Camp Sunshine, Cosco, ME, USA, Cosco, ME

SDSF (SDS Foundation) hosts a 6-day session at Camp Sunshine every other summer for SDS families to meet with each other and meet and learn from the top SDS experts in North America.

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Paint with us! Rare Disease Day Fundraiser for SDS, Metro Boston

Feb 29, 2:00 PM – 5:00 PM EST

Painting with a Twist, North Andover, MA, 10 High St, North Andover, MA 01845, USA

SDS Alliance partnered with Painting with a Twist in North Andover to host a painting event as a fundraiser.

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SDS Registry Family Day in Boston, MA, US

Sep 15, 2019, 8:00 AM – 4:00 PM EDT

Boston, MA, Harvard Medical School Joseph B Martin Center 77 Avenue Louis Pasteur NRB 133 Boston, MA 02155

Celebrating the SDS Registry's 10th anniversary! Please join us for a complimentary day of education, connection, and fun! - Hear updates from the SDS Registry - Learn about exciting research - Discover cutting-edge clinical trials for SDS - Connect with other SDS families

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