Desmoid Tumor Research Foundation

Desmoid Tumor Research Foundation (DTRF) is a non-profit organization dedicated to funding research for the treatment and cure of Desmoid tumors. Desmoid tumors, also known as aggressive fibromatosis, are rare, non-cancerous growths that can occur throughout the body. The foundation plays a crucial role in advancing understanding, treatment, and patient care for those affected by this rare condition.

Overview

The Desmoid Tumor Research Foundation was established with the primary goal of facilitating and funding research into desmoid tumors. These tumors, while benign, can be aggressive and infiltrate surrounding tissues and organs, leading to significant morbidity. The foundation supports research projects that aim to uncover the biological mechanisms behind these tumors, develop effective treatments, and ultimately find a cure.

Mission

The mission of the DTRF is to accelerate the development of improved therapies for desmoid tumors, provide support to patients and their families, and enhance public awareness about the condition. The foundation seeks to achieve this through direct funding of innovative research, fostering collaborations among scientists and clinicians, and hosting educational events for both the medical community and the public.

Research and Funding

DTRF provides grants and funding to researchers worldwide working on various aspects of desmoid tumors, including their genetics, molecular biology, and potential therapeutic targets. The foundation prioritizes projects that have a clear potential to translate into clinical benefits for patients. It also supports the establishment of patient registries and biobanks, which are essential resources for advancing research and improving patient care.

Patient Support and Advocacy

In addition to funding research, the Desmoid Tumor Research Foundation offers support and resources to individuals diagnosed with desmoid tumors and their families. This includes providing information on treatment options, facilitating access to expert care, and connecting patients with support networks. The foundation also advocates for increased recognition of desmoid tumors within the medical community and among policymakers, aiming to improve outcomes for those affected by the disease.

Events and Community Engagement

The DTRF organizes events such as annual patient meetings, fundraising events, and awareness campaigns to engage the community and raise funds for research. These events provide opportunities for patients, families, researchers, and healthcare professionals to connect, share experiences, and collaborate towards the common goal of conquering desmoid tumors.

Conclusion

The Desmoid Tumor Research Foundation plays a vital role in the fight against desmoid tumors by supporting research, advocating for patients, and raising public awareness. Through its efforts, the foundation aims to improve the lives of those affected by desmoid tumors and ultimately find a cure for this challenging condition.

NIH genetic and rare disease info

• NIH info on Desmoid Tumor Research Foundation

Desmoid Tumor Research Foundation is a rare disease.