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SickKids 8th National Marrow Failure & Myelodysplasia (MFM) Patient and Family Virtual Conference
SickKids 8th National Marrow Failure & Myelodysplasia (MFM) Patient and Family Virtual Conference

sáb, 13 abr

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free virtual event

SickKids 8th National Marrow Failure & Myelodysplasia (MFM) Patient and Family Virtual Conference

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.

Registration is closed
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Horario y ubicación

13 abr 2024, 13:00 – 19:00 GMT-4

free virtual event

Acerca del evento

8th National Marrow Failure & Myelodysplasia (MFM) Patient and Family Virtual Conference 

April 13, 2024

1:00 p.m.-6:00 p.m.ET

Viewing in Eastern Time

Register and find all details at https://web.cvent.com/event/1b80f758-9080-4cb8-8cdf-d4f72889e4b1/summary

We are 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. 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.

Highlighted Topics

  • Development of preleukemia, leukemia, and solid tumors in adults & children with bone marrow failure
  • Raising awareness of new research to understand the diseases and develop new treatments in Canada and abroad
  • Overview of new developments related to the conditions and their treatments
  • Information about Canadian treatment centres and support groups

The conference is FREE!

You can attend and watch the sessions from home.

Examples of bone marrow failure and myelodysplastic disorders relevant to the conference:

  • Aplastic anemia
  • Fanconi anemia
  • Shwachman-Diamond syndrome
  • Dyskeratosis congenita
  • Congenital amegakaryocytic thrombocytopenia
  • Diamond Blackfan anemia
  • Myelokathexis
  • Familial thrombocytopenia with predisposition to leukemia
  • GATA2-related disorders
  • Sideroblastic anemia
  • Congenital neutropenia (e.g.Kostmann neutropenia)
  • Cyclic neutropenia
  • Glycogen storage disease type Ib
  • Barth’s syndrome
  • Thrombocytopenia with absent radii
  • Familial or hereditary thrombocytopenia
  • Myelodysplastic syndrome (familial MDS/leukemia, de novo MDS,therapy-related MDS)
  • Other bone marrow failure syndromes

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Alianza para el síndrome de Shwachman-Diamond, Inc.

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Correo electrónico : connect@SDSAlliance.org

Teléfono : +1-617-329-1838

Correo:  PO Box 2441, Woburn, MA 01888

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La Alianza del Síndrome de Shwachman-Diamond (SDS Alliance) es una organización sin fines de lucro 501(c)(3) dedicada a construir un mundo donde el Síndrome de Shwachman-Diamond (SDS) sea curable, a través de la investigación y la participación en actividades de promoción y educación.

 

SDS Alliance reúne a familias de pacientes, investigadores, médicos y otras partes interesadas diversas para comprender, diagnosticar y tratar mejor este devastador trastorno genético de predisposición al cáncer. SDS Alliance fue lanzada en 2020 por los padres de un niño con SDS, que son investigadores biomédicos y empresarios.

 

El liderazgo y los asesores científicos y médicos de SDS Alliance son médicos e investigadores experimentados que se concentran en combinar la perspectiva del paciente y la familia con soluciones basadas en la mejor evidencia científica disponible.

 

Las familias de todo el mundo son fundamentales para acelerar la misión de SDS Alliance de mejorar los resultados para todos los pacientes con SDS, especialmente las poblaciones de diversos orígenes que no tienen posibles coincidencias de donantes de células madre. SDS Alliance eleva intencionalmente las voces de personas de diversos orígenes, la comunidad LGBTQ+, personas con discapacidades y grupos marginados, ya que aportan información crítica y hacen avanzar la misión de SDS Alliance.

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