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SDS Events - Global

Community Calendar

Juli 2024
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15:00
Global SDS Family Coffee Chat
+1 weitere
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Upcoming and Past Events

  • Global SDS Family Coffee Chat
    Global SDS Family Coffee Chat
    Mehrere Termine
    So., 11. Aug.
    Virtual event
    11. Aug. 2024, 15:00 – 17:00
    Virtual event
    Monthly virtual get-together to build community and support.
    Teilen
  • Ask an Expert: Dr. Lisa McReynolds on Clones, Germline, and Somatic Mutations, and why they matter for SDS
    Ask an Expert: Dr. Lisa McReynolds on Clones, Germline, and Somatic Mutations, and why they matter for SDS
    So., 19. Mai
    Virtual. Register at sdsalliance.org/cce
    19. Mai 2024, 14:00 – 15:00 GMT-4
    Virtual. Register at sdsalliance.org/cce
    Teilen
  • SickKids 8th National Marrow Failure & Myelodysplasia (MFM) Patient and Family Virtual Conference
    SickKids 8th National Marrow Failure & Myelodysplasia (MFM) Patient and Family Virtual Conference
    Sa., 13. Apr.
    free virtual event
    13. Apr. 2024, 13:00 – 19:00 GMT-4
    free virtual event
    This 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.
    Teilen
  • POPS: Global Patient Advocacy and Partnering Summit
    POPS: Global Patient Advocacy and Partnering Summit
    Sa., 20. Mai
    Virtual event
    20. Mai 2023, 10:00 – 15:00 GMT-4
    Virtual event
    The 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.
    Teilen
  • 10th International Congress on Shwachman-Diamond Syndrome
    10th International Congress on Shwachman-Diamond Syndrome
    Di., 18. Apr.
    Robinson College, Cambridge, UK
    18. Apr. 2023, 09:00 GMT-4 – 21. Apr. 2023, 13:00 GMT-4
    Robinson College, Cambridge, UK, Grange Rd, Cambridge CB3 9AN, 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. Due to the global Covid-19 pandemic, the event was postponed several times. Now scheduled for April 18-21, 2023!
    Teilen
  • 4e journées des neutropénies (4th French National Neutropenia Days)
    4e journées des neutropénies (4th French National Neutropenia Days)
    Fr., 24. März
    Paris
    24. März 2023, 09:00 – 16:00 MEZ
    Paris, Paris, France
    Nous vous invitons aux 4e journées des neutropénies qui se tiendront les vendredi 24 et samedi 25 mars prochain.
    Teilen
  • SickKids Canada - National MFM Virtual Patient and Family Conference
    SickKids Canada - National MFM Virtual Patient and Family Conference
    Sa., 30. Apr.
    Virtual
    30. Apr. 2022, 12:00 – 18:00 GMT-4
    Virtual
    The 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.
    Teilen
  • Fun-Run-Walk October 2020
    Fun-Run-Walk October 2020
    Sa., 24. Okt.
    Virtual run/walk, location of your choice
    24. Okt. 2020, 07:00 GMT-4 – 01. Nov. 2020, 23:00 GMT-5
    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
    Teilen
  • Postponed. New Date TBD. SDSF Family Conference at Camp Sunshine (ME, USA)
    Postponed. New Date TBD. SDSF Family Conference at Camp Sunshine (ME, USA)
    So., 12. Juli
    Camp Sunshine, Cosco, ME, USA
    12. Juli 2020, 14:00 GMT-4 – 16. Juli 2020, 10:00 GMT-4
    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.
    Teilen
  • Paint with us! Rare Disease Day Fundraiser for SDS, Metro Boston
    Paint with us! Rare Disease Day Fundraiser for SDS, Metro Boston
    Sa., 29. Feb.
    Painting with a Twist, North Andover, MA
    29. Feb. 2020, 14:00 – 17:00 GMT-5
    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.
    Teilen
  • SDS Registry Family Day in Boston, MA, US
    SDS Registry Family Day in Boston, MA, US
    So., 15. Sept.
    Boston, MA
    15. Sept. 2019, 08:00 – 16:00 GMT-4
    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
    Teilen
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Shwachman-Diamond Syndrome Alliance Inc.

Social:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441, Woburn, MA 01888

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The Shwachman-Diamond Syndrome Alliance (SDS Alliance) is a 501(c)(3) nonprofit organization dedicated to building a world where Shwachman-Diamond Syndrome (SDS) is a manageable condition and all patients and their families can thrive - through driving research and engaging in advocacy and education.

 

The SDS Alliance brings together patient families, researchers, clinicians, and other diverse stakeholders to better understand, diagnose, and treat this devastating cancer predisposition genetic disorder. The SDS Alliance was launched in 2020 by the parents of a child with SDS, who are biomedical researchers and entrepreneurs.

 

The SDS Alliance’s leadership and scientific & medical advisors are experienced clinicians and researchers focused on combining the patient-family perspective with solutions based on the best available scientific evidence.

 

Families from around the world are fundamental to accelerating the SDS Alliance’s mission to improve outcomes for all SDS patients, especially populations from diverse backgrounds who don’t have possible stem-cell donor matches. The SDS Alliance intentionally elevates the voices of individuals from diverse backgrounds, the LGBTQ+ community, people with disabilities, and marginalized groups, as they bring critical insight and advance the SDS Alliance’s mission.

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