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SDS Community and Scientific Events
July 2025
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Global SDS Family Coffee Chat
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Upcoming Events
Multiple DatesJul 13, 2025, 3:00 PM – 5:00 PMVirtual eventMonthly virtual get-together to build community and support.
Jun 04, 2025, 10:00 AM – 3:30 PMLocation is TBDThe SDS PFDD meeting is a very special and unique opportunity for patients and families to come together and share our voices and stories with the purpose of accelerating research and improving care. The meeting is part of our "100 Voices to #CureSDS" campaign. Don't miss it!
Jan 23, 2025, 4:00 PM – 5:00 PMZoom
Oct 20, 2024, 1:00 PM – 5:00 PMhttps://www.sdsalliance.org/sds-popsThe only global, virtual meeting of its kind to provide patients, caregivers, scientists, physicians, and all other stakeholders with an opportunity to connect and discuss all things related to Shwachman-Diamond Syndrome research and advocacy.
May 19, 2024, 2:00 PM – 3:00 PM EDTVirtual. Register at sdsalliance.org/cce
Apr 13, 2024, 1:00 PM – 7:00 PM EDTfree virtual eventThis meeting is for patients and families with bone marrow failure disorders and myelodysplastic syndrome, physicians, other health-care workers, fellows, residents and all others who are interested in the field. Children and adult patients are welcome.
May 20, 2023, 10:00 AM – 3:00 PM EDTVirtual eventThe first global, virtual, meeting of its kind to provide patients, caregivers, scientist, physicians, and all other stakeholders access to the latest information on all things Shwachman-Diamond Syndrome.
Apr 18, 2023, 9:00 AM EDT – Apr 21, 2023, 1:00 PM EDTRobinson College, Cambridge, UK, Grange Rd, Cambridge CB3 9AN, 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 several times. Now scheduled for April 18-21, 2023!
Mar 24, 2023, 9:00 AM – 4:00 PM GMT+1Paris, Paris, FranceNous vous invitons aux 4e journées des neutropénies qui se tiendront les vendredi 24 et samedi 25 mars prochain.
Apr 30, 2022, 12:00 PM – 6:00 PM EDTVirtualThe National Marrow Failure & Myelodysplasia program at SickKids Canada is pleased to invite you to this interactive meeting. It is an ideal opportunity to learn, network with other families and meet experts in the field.
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
Past Events
- Multiple DatesJul 13, 2025, 3:00 PM – 5:00 PMVirtual eventMonthly virtual get-together to build community and support.
- Jun 04, 2025, 10:00 AM – 3:30 PMLocation is TBDThe SDS PFDD meeting is a very special and unique opportunity for patients and families to come together and share our voices and stories with the purpose of accelerating research and improving care. The meeting is part of our "100 Voices to #CureSDS" campaign. Don't miss it!
- Jan 23, 2025, 4:00 PM – 5:00 PMZoom
- Oct 20, 2024, 1:00 PM – 5:00 PMhttps://www.sdsalliance.org/sds-popsThe only global, virtual meeting of its kind to provide patients, caregivers, scientists, physicians, and all other stakeholders with an opportunity to connect and discuss all things related to Shwachman-Diamond Syndrome research and advocacy.
- May 19, 2024, 2:00 PM – 3:00 PM EDTVirtual. Register at sdsalliance.org/cce
- Apr 13, 2024, 1:00 PM – 7:00 PM EDTfree virtual eventThis meeting is for patients and families with bone marrow failure disorders and myelodysplastic syndrome, physicians, other health-care workers, fellows, residents and all others who are interested in the field. Children and adult patients are welcome.
- May 20, 2023, 10:00 AM – 3:00 PM EDTVirtual eventThe first global, virtual, meeting of its kind to provide patients, caregivers, scientist, physicians, and all other stakeholders access to the latest information on all things Shwachman-Diamond Syndrome.
- Apr 18, 2023, 9:00 AM EDT – Apr 21, 2023, 1:00 PM EDTRobinson College, Cambridge, UK, Grange Rd, Cambridge CB3 9AN, 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 several times. Now scheduled for April 18-21, 2023!
- Mar 24, 2023, 9:00 AM – 4:00 PM GMT+1Paris, Paris, FranceNous vous invitons aux 4e journées des neutropénies qui se tiendront les vendredi 24 et samedi 25 mars prochain.
- Apr 30, 2022, 12:00 PM – 6:00 PM EDTVirtualThe National Marrow Failure & Myelodysplasia program at SickKids Canada is pleased to invite you to this interactive meeting. It is an ideal opportunity to learn, network with other families and meet experts in the field.
- 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
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