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).
SDS Events - Global
- Jun 12, 6:00 AM – Jun 15, 12:00 PMCambridge, UK, Cambridge, UKThis 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. Due to the global Covid-19 pandemic, the event was postponed to 2021, and changed to a virtual format.
- Oct 24, 2020, 7:00 AM EDT – Nov 01, 2020, 11:00 PM ESTVirtual run/walk, location of your choiceIt's finally here: the first ever virtual global fun run/walk event to support Shwachman-Diamond Syndrome (SDS) research! www.SDSAlliance.org/steps
- Jul 12, 2020, 2:00 PM EDT – Jul 16, 2020, 10:00 AM EDTCamp Sunshine, Cosco, ME, USA, Cosco, MESDSF (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.
- Feb 29, 2020, 2:00 PM – 5:00 PM ESTPainting with a Twist, North Andover, MA, 10 High St, North Andover, MA 01845, USASDS Alliance partnered with Painting with a Twist in North Andover to host a painting event as a fundraiser.
- Sep 15, 2019, 8:00 AM – 4:00 PM EDTBoston, MA, Harvard Medical School Joseph B Martin Center 77 Avenue Louis Pasteur NRB 133 Boston, MA 02155Celebrating 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