Inside SDS

InsideSDS
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Please join Nicole and Michelle for our new show, Inside SDS! We are still the same two moms, working to connect patients, families, caregivers, and support members with clinicians, researchers, and knowledgeable professionals dedicated to supporting those with SDS. Shwachman-Diamond Syndrome is a rare disorder that affects only 1 in every 150,000 births. It is characterized by bone marrow failure, pancreatic insufficiency, and skeletal abnormalities. Due to its variable presentation, it is likely underdiagnosed.

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  1. 3월 23일

    Registry Recap with Dr. Kasiani Myers

    Please join Nicole and Michelle for our new show, Inside SDS! This show featured Dr. Myers, Practicing out of Cincinnati Children's Hospital, she is one of the amazing doctors who works tirelessly for the SDS Registry! The Shwachman-Diamond Syndrome (SDS) Registry is committed to accelerating the pace of discovery for treatments and therapies of SDS. The Registry provides access to clinical expertise as well as cutting-edge research.Servicing over 400 patients, they have collaborated on over 40 publications presenting the research behind the samples. During this presentation,she gave some background about the registry, brought us up to speed on the progress they have made, and informed us of how we can help To catch the video replay, find us on our Youtube (https://www.youtube.com/@InsideSDS) If you're unable to participate on March 22nd, Please email any questions to GoInsideSDS@Gmail.com

    59분

  2. 2025. 10. 28.

    General and Bone Marrow Failure Dentistry with Dr. S. Thikkurissy (Dr. Bobby)

    Please join Nicole and Michelle for our new show, Inside SDS! We are still the same two moms, working to connect patients, families, caregivers, and support members with clinicians, researchers, and knowledgeable professionals dedicated to supporting those with SDS. This show will feature Dr. S. Thikkurissy (Dr. Bobby), a Pediatric Dentist from Cincinatti Childrens Hospital. Dr. Bobby is a pediatric dentist focused on the comprehensive oral care of infants, children, adolescents and patients with special health needs. Aside from his service in the Division of Pediatric Dentistry and Orthodontics, he is also a faculty member in the Division of Bone Marrow Transplantation and Immune Deficiency. He works with the hematology and oncology team to provide the best oral health to patients with cancer, Fanconi anemia, telomere disorders, epidermolysis bullosa and those undergoing bone marrow transplantation. Dr. Bobby will present on a topic we've been needing for years, dental care and precautions.

    48분

  3. 2025. 08. 25.

    SDS Consensus Input with Dr. Jane Koo

    We're Back! Please join Nicole and Michelle for our new show, Inside SDS! We are still the same two moms, working to connect patients, families, caregivers, and support members with clinicians, researchers, and knowledgeable professionals dedicated to supporting those with SDS. Our first show features Dr. Jane Koo, a Pediatric Hematologist and Bone Marrow Transplant doctor from Cincinatti Childrens Hospital to update the community on the SDS Consensus. Dr. Koo presented on What the SDS Consensus is and how it can help patients and providers. She is also seeking community feedback for what needs to be included in an update to the consensus. You can watch the broadcast replay on Facebook (https://www.facebook.com/InsideSDS) and Youtube (https://www.youtube.com/@InsideSDS)

    54분
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소개

Please join Nicole and Michelle for our new show, Inside SDS! We are still the same two moms, working to connect patients, families, caregivers, and support members with clinicians, researchers, and knowledgeable professionals dedicated to supporting those with SDS. Shwachman-Diamond Syndrome is a rare disorder that affects only 1 in every 150,000 births. It is characterized by bone marrow failure, pancreatic insufficiency, and skeletal abnormalities. Due to its variable presentation, it is likely underdiagnosed.

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    InsideSDS
  • 방송 연도
    2025년 - 2026년
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    3
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