Support Networks
Finding good, reliable information online can be difficult, especially when you are confronted with a diagnosis of twin to twin transfusion syndrome(TTTS) . Not all information is equal, and can often be filled with jargon, and leave you with more questions than you have answers for.
A diagnosis can also be a lonely time, and you may feel like you need the support of those who've been there before. Below are our recommendations for reliable, friendly and wonderful support networks for you.
A diagnosis can also be a lonely time, and you may feel like you need the support of those who've been there before. Below are our recommendations for reliable, friendly and wonderful support networks for you.
Medical Support and Information
The Fetal Health Foundation - Our partnership helps us to help offer medical support and information to any parent who contacts us. The Fetal Health Foundation is a leader in organizations that support families facing a fetal diagnosis. If you have any questions regarding options or choices they can help. Their medical advisory board includes leading Maternal Fetal Medicine specialists with knowledge and experience in the most advanced treatments and cures for many fetal diagnoses, including Twin to Twin Transfusion Syndrome.
The TAPS Support Foundation -This partnership helps our families who have faced another disease that effects identical multiples, Twin Anemia Polycythemia Sequence (TAPS). While both effect single placenta multiples, TAPS has different symptoms and diagnostic tools and can easily be overlooked, and can occur along with TTTS in the same pregnancy. This international foundation is a unique combination of families and care providers who together are dedicated to breaking down walls between research and patients. They bring the latest research to diagnose patients and ensure that research continues into TAPS.
The Fetal Health Foundation - Our partnership helps us to help offer medical support and information to any parent who contacts us. The Fetal Health Foundation is a leader in organizations that support families facing a fetal diagnosis. If you have any questions regarding options or choices they can help. Their medical advisory board includes leading Maternal Fetal Medicine specialists with knowledge and experience in the most advanced treatments and cures for many fetal diagnoses, including Twin to Twin Transfusion Syndrome.
The TAPS Support Foundation -This partnership helps our families who have faced another disease that effects identical multiples, Twin Anemia Polycythemia Sequence (TAPS). While both effect single placenta multiples, TAPS has different symptoms and diagnostic tools and can easily be overlooked, and can occur along with TTTS in the same pregnancy. This international foundation is a unique combination of families and care providers who together are dedicated to breaking down walls between research and patients. They bring the latest research to diagnose patients and ensure that research continues into TAPS.
Parent Support Groups
We are partnered up with a number of closed groups on Facebook that offer peer support for any parent in any stage of their TTTS pregnancy.
TTTS Hope & Connections - Support for all TTTS families
TTTS Grief Support - Support for parents who have faced a loss of their child(ren) due to TTTS
TTTS Survivors with a Guardian Angel - Support for parents who have a combination of survivors and losses due to TTTS.
Identical Multiples NICU Support - Support for all parents who have/are facing a NICU stay after their single placenta pregnancy.
Twin Anemia Polycythemia Sequence (TAPS) Support - Support for all families who have been diagnosed with TAPS.
Twin to Twin Transfusion Australia Inc - Support for all parents who have faced or are facing a TTTS diagnosis in Australia and New Zealand.
Twin to Twin Transfusion Syndrome - UK Parents - Support for all parents who have faced or are facing a TTTS diagnosis in the United Kingdom.
Identical Twins but Medically Different - Support for families of surviving ID twins with medical differences. While this group is not TTTS specific, often our surviving babies can experience medical differences due to the stresses they faced in utero and/or due to prematurity.
Mono-Di Twins/Multiples Support - Connect with other families with identical multiples.
MoDi & MoMo Twins: Monochorionics - Medical/Informational support for all identical multiples pregnancies.
We are partnered up with a number of closed groups on Facebook that offer peer support for any parent in any stage of their TTTS pregnancy.
TTTS Hope & Connections - Support for all TTTS families
TTTS Grief Support - Support for parents who have faced a loss of their child(ren) due to TTTS
TTTS Survivors with a Guardian Angel - Support for parents who have a combination of survivors and losses due to TTTS.
Identical Multiples NICU Support - Support for all parents who have/are facing a NICU stay after their single placenta pregnancy.
Twin Anemia Polycythemia Sequence (TAPS) Support - Support for all families who have been diagnosed with TAPS.
Twin to Twin Transfusion Australia Inc - Support for all parents who have faced or are facing a TTTS diagnosis in Australia and New Zealand.
Twin to Twin Transfusion Syndrome - UK Parents - Support for all parents who have faced or are facing a TTTS diagnosis in the United Kingdom.
Identical Twins but Medically Different - Support for families of surviving ID twins with medical differences. While this group is not TTTS specific, often our surviving babies can experience medical differences due to the stresses they faced in utero and/or due to prematurity.
Mono-Di Twins/Multiples Support - Connect with other families with identical multiples.
MoDi & MoMo Twins: Monochorionics - Medical/Informational support for all identical multiples pregnancies.
Grief Support Groups
Introducing The Butterfly Garden, a project we are so proud to be a part of. The Butterfly Garden is an online support group that provides a safe place for bereaved families to talk about their loss freely and openly.
The Butterfly Garden supports families during all stages of loss, both during and after pregnancy
The Butterfly Garden supports families during all stages of loss, both during and after pregnancy
We have a number of groups we work with on Facebook that we would like to invite you to join if you have faced the loss of your child(ren) to TTTS, TAPS, TRAP, SIUGR.
The Butterfly Garden
TTTS Grief Support - for all families who have experienced any kind of loss.
TTTS - Survivors with Guardian Angels - for families who have a combination of survivors and baby loss within their pregnancy.
International Baby and Child Loss and Grieving Parents Support Groups
Multi-National
Compassionate Friends
Still Standing Magazine
Helping Parents Heal
Australia - SANDS
Canada - Pregnancy and Infant Loss Network
UK - SANDS
USA - MISS Foundation
The Butterfly Garden
TTTS Grief Support - for all families who have experienced any kind of loss.
TTTS - Survivors with Guardian Angels - for families who have a combination of survivors and baby loss within their pregnancy.
International Baby and Child Loss and Grieving Parents Support Groups
Multi-National
Compassionate Friends
Still Standing Magazine
Helping Parents Heal
Australia - SANDS
Canada - Pregnancy and Infant Loss Network
UK - SANDS
USA - MISS Foundation
