Team Vienna 4 SUDC Awareness Inc. (nonprofit, 501c3)
Resources
GRIEF SUPPORT:
*A great list of online support is available here on The SUDC Coalition website: https://www.sudccoalition.com/programs-1
*The SUDC Coalition Circle- Virtual online grief support groups on the 5th and 20th of each month with licensed professionals. Email Candice@SUDCcoalition.com for more info
RESEARCH OPPORTUNITIES:
There are few studies on unexplained pediatric deaths.
Robert's Program on Sudden Unexpected Death in Pediatrics (SUDP)
P.I: Dr. Richard Goldstein
Boston Children's Hospital/Harvard Medical School
-an undiagnosed disease program of translational research (to improve health outcomes)
-the study includes unexplained deaths from live birth to 18 years old
-Involved Subspecialties: General Peds, Neuroscience, Neuropath, Neuro, Path, Cardiology, Genetics, Neuroimaging, Palliative Care, Bioinformatics, Metabolism
-includes a medical records review, pedigree, neuropath assessment, DNA whole exome sequencing, Collaborative Case Conferences
-Results are reported back to the family and referring physician with recommended next steps
-To find out more: Please email Chrissy at RobertsProgram@Childrens.Harvard.edu
*Please see https://www.sudccoalition.com/programs-2 for more research opportunities.
