~ SOFT Trisomy Registry Information ~
SOFT welcomes medical professionals, expectant parents, families with living children and those who no longer have their child, including those whose pregnancy ended early.
Personal Information Notice: SOFT will not share your personal information with any other organizations. SOFT will ask for your permission before allowing another SOFT family to contact you. SOFT will make your information available to the Chapter Chair for members in your State.
SOFT membership statistics indicate 63% of registered children have trisomy 18 with 5% being mosaic and about 2/3 are female.
22% have trisomy 13 with 3.4% being mosaic. Other chromosome disorders represent 15%. The predominance of trisomy 18 members has been consistent since 1980 as this syndrome occurs more often than trisomy 13.
On-Line Registration Options:
1. Family or Supporter New Registration, or Renewal with changes: Register or renew membership here. Please update your child’s surgery information when you renew, or when you first register. We do not share personal information but the non-personal surgery information is helpful to other families in obtaining surgery for their child.
2. Family or Supporter no-change renewal: If there are no changes to your current family/child registration information, use this renewal “Short Form.”
3. Healthcare Professionals Free Registration: Register or renew membership on-line.