RESOURCES
All Resources
TRIS Project
Trisomy 13, Trisomy 18 and related disorders ~ The TRIS Project ~ Tracking Rare Incidence Syndromes The TRIS project provides a means to change perceptions about children with rare trisomy...
Ethical Rounds: An Infant with T18 & VSD
PROFESSIONAL VIEWPOINT: JOURNAL CLUB Reprinted from the SOFT Times, May/Jun/Jul 2011. Janvier A, Okah F, Farlow B, Lantos JD. 2011. Ethical Rounds: An infant with trisomy 18 and a ventricular...
Managing Grief, Stress and Loss for Special Needs Parents
Workshop Presentation From the 2011 SOFT Conference in Chicago Introduction: My name is Maraline Mattke and I am a Licensed Clinical Social Worker. That means I have a Masters Degree and special...
Palliative and Hospice Care
A brief description of Pediatric Palliative Care, Perinatal Palliative Care and Pediatric Hospice Care Pediatric Palliative Care Palliative Care is often recommended for newborns with trisomy 18 or...
Medicaid Waiver, SCHIP, SSI
Medicaid Waiver, SCHIP, SSI, Katie Beckett, TEFRA, etc. Medicaid Waivers Waivers are programs that states can use to test new or existing ways to deliver and pay for health care services in Medicaid...
What Does “Rare” Disorder Mean?
PROFESSIONAL VIEWPOINT: Journal Club All of us at SOFT and the trisomy 18 community worldwide were saddened by the news of the two hospitalizations of Bella Santorum, daughter of Republican...
In Stitches – Knitting Club
In Stitches Workshop from the 2010 SOFT Conference in Sioux Falls An early workshop in at the 2010 conference in Sioux Falls was for knitters. Not completely according to plan, there were more...
Medical Ethics and Decision Making
Presentation From the 2010 SOFT Conference in Sioux Falls Presenters: Terry Peterson-Henry, D. O. Pediatric Palliative Care and Ellie Schellinger, MA. Medical Ethicist Medicine, although it is...