International Vanishing Twin Syndrome Foundation

International Vanishing Twin Syndrome Foundation Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from International Vanishing Twin Syndrome Foundation, Nonprofit Organization, Frederick, MD.

The International Vanishing Twin Syndrome Foundation (IVTSF) is a 501(c)(3) nonprofit dedicated to advancing research, education, and support surrounding vanishing twin syndrome (VTS) and multifetal loss.

We are honored to join forces with PreemieWorld Foundation and look forward to building meaningful opportunities to educ...
06/04/2026

We are honored to join forces with PreemieWorld Foundation and look forward to building meaningful opportunities to educate, support, and empower families around the world!

🕯️ SAVE THE DATE 🕯️The International Vanishing Twin Syndrome Foundation is honored to join The Tears Foundation, First C...
06/02/2026

🕯️ SAVE THE DATE 🕯️

The International Vanishing Twin Syndrome Foundation is honored to join The Tears Foundation, First Candle, and Return to Zero H.O.P.E. as a community partner for the 2026 National Wave of Light in Washington, D.C.

📅 October 15
📍 National Mall – Lincoln Memorial Reflecting Pool
📍 Washington, D.C.
Registration link in the comments below.

Each year, families around the world unite to remember babies lost through stillbirth, infant loss, selective reduction, and miscarriage, including vanishing twin syndrome and other forms of pregnancy and infant loss. During the Wave of Light, candles are lit across time zones to create a continuous 24-hour circle of remembrance around the globe.

We invite our community to join us as we honor the lives of babies gone too soon, support bereaved families, and raise awareness of the many forms of loss that can occur during pregnancy and infancy.

Together, we remember. Together, we shine a light. 💜🦋

05/25/2026

Today, Multiples of America honors the brave men and women who gave their lives in service to our country, and we remember the families who carry both the pride and the profound loss of that sacrifice.

On this Memorial Day, we extend our gratitude to the parents, spouses, children, siblings, and loved ones whose lives have been forever changed. Your strength, resilience, and sacrifice will never be forgotten.

May we take time to remember, reflect, and honor those who gave everything for the freedoms we share.

05/25/2026

In monochorionic twin care, families may hear “clinical trial” or “research study” early on, sometimes at the same time as they are trying to understand everything else. This page puts clear meaning behind those words. It explains what clinical trials are, how they differ from other kinds of research, and the types of studies families may be invited to take part in.

It also sets out what should be in place before anyone joins a trial: review and approval processes, ethics oversight, and what informed consent is meant to look like in practice. It spells out participant rights, including that participation is voluntary and that people can withdraw. The page includes a practical list of questions families can use when a trial is being discussed, as well as a downloadable version of the information.

Visit the website for more information. A free downloadable guide is available on the page: https://www.tapssupport.com/what-are-clinical-trials/

📢 Rare Disease Classification UpdateThe International Vanishing Twin Syndrome Foundation (IVTSF) recently received a for...
05/25/2026

📢 Rare Disease Classification Update

The International Vanishing Twin Syndrome Foundation (IVTSF) recently received a formal response from Orphanet regarding our proposal for recognition of Vanishing Twin Syndrome (VTS) within the Orphanet classification framework.

The review process led to an important outcome:

✅ Orphanet's Medical and Scientific Committee validated the creation of Fetus in fetu (ORPHA:728725), a rare embryonic anomaly involving the presence of a non-progressing twin within a developing sibling.

Why is this important?

Fetus in fetu is believed to arise from abnormal twinning during early embryonic development. Although distinct from VTS, it is part of the broader spectrum of atypical twinning phenomena and developmental outcomes that may occur in pregnancies that begin as multiple gestations. As such, it represents an area of scientific relevance to researchers studying VTS, multifetal loss, chimerism, embryonic development, and related developmental anomalies.

🔹 ORPHAcodes serve as internationally recognized identifiers used throughout the rare disease ecosystem.

🔹 Inclusion in Orphanet increases visibility within rare disease information systems and supports integration with biomedical databases, ontology resources, and research infrastructure used around the world.

🔹 Orphanet classifications help facilitate literature discovery, data sharing, and more consistent terminology across the scientific and clinical communities.

While underdiagnosed, VTS is not technically rare and does not warrant sufficient inclusion in Orphanet, this is significant progress. And for that, we thank the Orphanet team for all their efforts. 🙏💙🦋💜

We are thrilled to announce that Carolina Negrin () has been selected for a second George Washington University () Dewey...
05/22/2026

We are thrilled to announce that Carolina Negrin () has been selected for a second George Washington University () Dewey Parker Micro-Internship with the International Vanishing Twin Syndrome Foundation (IVTSF)!

During her first internship, Carolina played a key role in expanding and organizing our growing literature repository, helping categorize and structure hundreds of research publications into a searchable resource for clinicians, researchers, and families. Her dedication, attention to detail, and passion for learning made a lasting impact on our organization.

We are equally excited to share that Carolina will continue her work with the IVTSF beyond the conclusion of her second micro-internship, serving as an ongoing intern through May 2027. During the coming year, she will support a variety of initiatives, including educational content development, knowledge translation, research resource organization, and public awareness efforts.

As a student at George Washington University, Carolina exemplifies the curiosity, professionalism, and commitment to service that these internship programs are designed to foster. We are grateful to GW's Career Services team and the Dewey Parker Micro-Internship Program for creating opportunities that connect talented students with mission-driven organizations.

Congratulations, Carolina! We are excited for all that we will accomplish together in the year ahead. 💜🦋

🎉 Today, the International Vanishing Twin Syndrome Foundation (IVTSF) celebrates its 1st birthday! 🎂🦋One year ago, we la...
05/22/2026

🎉 Today, the International Vanishing Twin Syndrome Foundation (IVTSF) celebrates its 1st birthday! 🎂🦋

One year ago, we launched with a mission to advance research, education, awareness, and compassionate support for individuals and families affected by vanishing twin syndrome (VTS) and multifetal loss.

In just 12 months, we have:
📚 Launched the IVTSF Knowledge Hub and Literature Repository
🌍 Expanded our international advisory network
🔬 Published and presented research on VTS at international conferences
🏥 Advanced medical terminology and classification efforts through SNOMED CT, ICD, and other global initiatives
🤝 Built partnerships with organizations, clinicians, researchers, and advocates around the world
💜 Continued working toward a future where no family faces multifetal loss without access to information, understanding, and compassionate care

To mark this milestone, we are excited to share the inaugural edition of the IVTSF Newsletter! Inside, you'll find updates on our latest initiatives, collaborations, advocacy efforts, resources, and plans for the future.

Thank you to our board members, advisors, volunteers, partners, donors, researchers, healthcare professionals, and the families who have shared their experiences and entrusted us with this mission. None of this would be possible without you.

Here's to our first year—and to everything still ahead. 🦋

📖 Newsletter linked in comments
🌐 To learn more, visit: vanishingtwinsyndrome.org

💜🦋💙
05/18/2026

💜🦋💙

Founding IVTSF Chair, Andrea G. Heffner, is sharing her art with the world, including her beautiful butterflies created ...
05/18/2026

Founding IVTSF Chair, Andrea G. Heffner, is sharing her art with the world, including her beautiful butterflies created in memory of her lost son.

Her illustrations will be featured in a children's book she is co-authoring with Dr. Nichole Cubbage - Research and Health Scientist, IVTSF founding Director! 🦋💙💜

Our founding Director, Dr. Nichole Cubbage, was featured on Good Morning Frederick, where she discussed the history of t...
05/17/2026

Our founding Director, Dr. Nichole Cubbage, was featured on Good Morning Frederick, where she discussed the history of the IVTSF, aspects of vanishing twin syndrome (VTS), and some of the Foundation's recent developments.

Thank you to Dani Gurrie at for the feature and all you do for the community.

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