Twin twin transfusion syndrome (TTTS) is a rare condition seen in twin monochorionic pregnancies, typically developing during the 15-26 week gestation period and usually due to unbalanced intertwin pl...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation surrounding twin to twin transfusion syndrome is limited due to its rarity and the challenges in conducting systematic clinical studies. As TTTS affects a relatively small number of pregnancies, comprehensive data collection and clinical characterization have been difficult. This is compounded by the complexity of the condition, which can vary significantly between cases.
To navigate twin to twin transfusion syndrome, consider consulting a maternal-fetal medicine specialist who has experience with high-risk pregnancies and TTTS. Resources such as the Twin to Twin Transfusion Syndrome Foundation (https://tttsfoundation.org) and Stichting TAPS Support (https://tapssupport.com) can provide valuable support and information. Additionally, participating in a patient registry or natural history study may help contribute to the understanding of TTTS. While genetic counseling is not currently indicated due to the absence of identified genetic factors, staying informed about ongoing research is crucial.
There are currently 7 active clinical trials exploring various aspects of twin to twin transfusion syndrome. These trials aim to improve understanding and treatment options for TTTS. You can find more information about these studies on ClinicalTrials.gov by searching for twin to twin transfusion syndrome. While there are no orphan drugs designated for this condition, the ongoing research offers hope for better management strategies in the future.
Actionable guidance for navigating care for twin to twin transfusion syndrome
To navigate twin to twin transfusion syndrome, consider consulting a maternal-fetal medicine specialist who has experience with high-risk pregnancies and TTTS. Resources such as the Twin to Twin Transfusion Syndrome Foundation (https://tttsfoundation.org) and Stichting TAPS Support (https://tapssupport.com) can provide valuable support and information. Additionally, participating in a patient registry or natural history study may help contribute to the understanding of TTTS. While genetic counseling is not currently indicated due to the absence of identified genetic factors, staying informed about ongoing research is crucial.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the twin to twin transfusion syndrome community
Helpful links for rare disease information and support
The documentation surrounding twin to twin transfusion syndrome is limited due to its rarity and the challenges in conducting systematic clinical studies. As TTTS affects a relatively small number of pregnancies, comprehensive data collection and clinical characterization have been difficult. This is compounded by the complexity of the condition, which can vary significantly between cases.
To navigate twin to twin transfusion syndrome, consider consulting a maternal-fetal medicine specialist who has experience with high-risk pregnancies and TTTS. Resources such as the Twin to Twin Transfusion Syndrome Foundation (https://tttsfoundation.org) and Stichting TAPS Support (https://tapssupport.com) can provide valuable support and information. Additionally, participating in a patient registry or natural history study may help contribute to the understanding of TTTS. While genetic counseling is not currently indicated due to the absence of identified genetic factors, staying informed about ongoing research is crucial.
There are currently 7 active clinical trials exploring various aspects of twin to twin transfusion syndrome. These trials aim to improve understanding and treatment options for TTTS. You can find more information about these studies on ClinicalTrials.gov by searching for twin to twin transfusion syndrome. While there are no orphan drugs designated for this condition, the ongoing research offers hope for better management strategies in the future.
Actionable guidance for navigating care for twin to twin transfusion syndrome
To navigate twin to twin transfusion syndrome, consider consulting a maternal-fetal medicine specialist who has experience with high-risk pregnancies and TTTS. Resources such as the Twin to Twin Transfusion Syndrome Foundation (https://tttsfoundation.org) and Stichting TAPS Support (https://tapssupport.com) can provide valuable support and information. Additionally, participating in a patient registry or natural history study may help contribute to the understanding of TTTS. While genetic counseling is not currently indicated due to the absence of identified genetic factors, staying informed about ongoing research is crucial.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the twin to twin transfusion syndrome community
Helpful links for rare disease information and support
The documentation surrounding twin to twin transfusion syndrome is limited due to its rarity and the challenges in conducting systematic clinical studies. As TTTS affects a relatively small number of pregnancies, comprehensive data collection and clinical characterization have been difficult. This is compounded by the complexity of the condition, which can vary significantly between cases.
To navigate twin to twin transfusion syndrome, consider consulting a maternal-fetal medicine specialist who has experience with high-risk pregnancies and TTTS. Resources such as the Twin to Twin Transfusion Syndrome Foundation (https://tttsfoundation.org) and Stichting TAPS Support (https://tapssupport.com) can provide valuable support and information. Additionally, participating in a patient registry or natural history study may help contribute to the understanding of TTTS. While genetic counseling is not currently indicated due to the absence of identified genetic factors, staying informed about ongoing research is crucial.
There are currently 7 active clinical trials exploring various aspects of twin to twin transfusion syndrome. These trials aim to improve understanding and treatment options for TTTS. You can find more information about these studies on ClinicalTrials.gov by searching for twin to twin transfusion syndrome. While there are no orphan drugs designated for this condition, the ongoing research offers hope for better management strategies in the future.
Actionable guidance for navigating care for twin to twin transfusion syndrome
To navigate twin to twin transfusion syndrome, consider consulting a maternal-fetal medicine specialist who has experience with high-risk pregnancies and TTTS. Resources such as the Twin to Twin Transfusion Syndrome Foundation (https://tttsfoundation.org) and Stichting TAPS Support (https://tapssupport.com) can provide valuable support and information. Additionally, participating in a patient registry or natural history study may help contribute to the understanding of TTTS. While genetic counseling is not currently indicated due to the absence of identified genetic factors, staying informed about ongoing research is crucial.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the twin to twin transfusion syndrome community
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 8, 2026
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.
Organizations with orphan designations or approved therapies for this disease
AGI Dermatics
Other
Aimmune Therapeutics, Inc.
Other
Aldagen, Inc.
Other
Amgen Inc
Other
Angion Biomedica Corporation
Other
Biostage, Inc.
Other
Chiesi USA, Inc.
Other
Children's Hospital of Pittsburgh
Other
Ferring Pharmaceuticals Inc.
Other
GE Healthcare Inc.
Other
Genentech, Inc.
Other
Gilead Sciences, Inc.
Other
Invero Pharma, Inc.
Other
Janssen Research & Development, LLC
Other
Mallinckrodt Pharmaceuticals Ireland Limited
Other
N30 PHARMAceuticals, LLC
Other
QOL Medical, LLC
Other
Questcor Pharmaceuticals, Inc.
Other
Stealth Biotherapeutics Inc.
Other
Teijin America, Inc.
Other