Connect with Your Community - The Desmoid Tumor Research Foundation

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There is nothing better than talking with someone else who just “gets it.” If you’ve been diagnosed with a desmoid tumor or Familial Adenomatous Polyposis (or both), it’s easy to connect with your community through online support groups and local patient advocacy organizations. You’ll be welcomed with open arms! (Please note that these groups are not affiliated with the DTRF.)

If you run a patient group in your country, the DTRF invites you to join our virtual Roundtable Meeting for Desmoid Tumor Groups held biannually for leaders of all groups around the world. Email us at info@dtrf.org for more information.

Are you aware of a group in your country/language that isn’t listed below?

Map List

Use the interactive map to find groups in your country or in your language.

U.S. & International

The Desmoidian

The Desmoidian is the largest online community for desmoid tumor patients & caregivers. The group is patient-run, patient-moderated, and U.S.-based with members from around the world. (*The Desmoidian is independent and not affiliated with the DTRF.*)

Australia

Australian Desmoid Tumor Support Group

For patients and caregivers living in Australia.

Belgium & the Netherlands

contactgroep desmoid (lotgenotencontact)

For patients and caregivers in the Netherlands and Belgium.

Brazil

Desmoide

For patients and caregivers living in Brazil.

Canada

Canadian Desmoid Support Group

For patients and caregivers living in Canada.

German Speaking

desmoid erkrankte-agressive fibromatose

For German-speaking patients and caregivers.

German Speaking

Desmoid Tumor (Aggressiver Fibromatose)

For German-speaking patients and caregivers.

Ireland

Desmoid tumour support group Ireland

For patients and caregivers living in Ireland.

Korea

“데스모이드 종양 (desmoid tumor) 치료 목적으로 하는 모임 / A group for the purpose of treating desmoid tumor

Operates on the open social community app Naver Café.

Denmark

Desmoide tumors, fibromatose- Skandinavia

For patients and caregivers living in Norway.

Poland

Guzy desmoidalne – FIBROMATOZA

For patients and caregivers in Poland.

Spanish-Speakers

DESMOIDE… LAS VOCES DE LOS GUERREROS

For Spanish-speaking patients and caregivers.

United Kingdom

Desmoid United UK

For patients and caregivers in the UK. Their aim is to bring patients together to support, share information and raise awareness. They have successfully organized around several patient meet ups in the UK. In 2020, they hosted the Desmoid Fibromatosis Patient Conference.

United Kingdom

Desmoid Fibromatosis Patients & Caregivers UK

Shares the latest links and news from social media regarding desmoid tumors in the United Kingdom.

U.S. & International

Wee Little Warriors- Juvenile Desmoid Tumor Patients

For caregivers of pediatric patients.

U.S. & International

F.A.P (Familial Adenomatous Polyposis)

For FAP patients and caregivers.

Brasil

Tumor Desmóide Brasil

Primary language: Portuguese

Email: desmoidetumor@gmail.com

Tumor Desmóide Brasil’s mission is to provide unity, knowledge, strength, health, and quality of life for the entire Tumor Desmoid Brasil community so people can have access to information, research, and treatments in a safe, focused, and respectful way. We are rare, but together we are stronger!

Canada

The Desmoid Tumour Foundation of Canada (DFC)

Primary language: English

The Desmoid Tumor Foundation of Canada is a registered Canadian charity dedicated to funding research for a cure for desmoid tumors.DFC was founded in 2016, motivated by a personal connection to the disease. Thanks to the benefits of research underway through the U.S. foundation, the DTRF, DFC has seen improvements but there is more to be done.

The DFC’s goal is to raise funds for research as well as to provide a framework for a support network for those affected.

United Kingdom

Desmoid Aid UK

Primary language: English

Desmoid Aid UK is a small, dedicated charity based in the UK set up to directly support people diagnosed with desmoid tumours and undergoing treatment. Our aim is to provide small financial grants to patients to help towards unexpected costs, and also to provide an online presence and signposting service for desmoid patients and their families.

Desmoid Aid UK is the a result of personal experience. The organization’s trustees have experience of the disease from both professional and personal perspectives.

Denmark

Desmoid Tumor Denmark

Primary language: Danish

Email: kontakt@desmoidtumor.dk

Desmoid Tumor Denmark is a Danish registered association founded in February 2022 by a board consisting of people who are impacted by this rare disease.

Denmark is a small country and before the foundation of Desmoid Tumor Denmark there didn’t exist much information or substantial understanding of the disease in Denmark. Therefore, it was very important for us to create an association and a website to – first of all – helps desmoid tumor patients and relatives in Denmark by providing them with extensive information about desmoid tumors, available treatments and research, and a supportive network. It also spreads more knowledge and awareness about desmoid tumors in collaboration with other international organizations like the DTRF with the goal of improving the treatment of this rare disease.

On our website, you will find extensive information. If you have questions, you are always very welcome to send us an email.

No desmoid tumor patient should feel alone.

The Netherlands & Belgium

Contactgroep Desmoid

Primary language: Dutch

Email: desmoid@patientenplatformsarcomen.nl

As part of the bigger platform for sarcoma patients “Patientenplatform sarcomen” in The Netherlands, the Contactgroep Desmoid is a patient group specifically for Dutch desmoid patients.

In the beginning of 2018, three desmoid patients took matters into their own hands and started this initiative for Dutch desmoid patients. Such a group did not exist before, although there was a great need for good and understandable information (in Dutch) and a representation for Dutch patients abroad. Now we represents Dutch patients in the Netherlands and Belgium and works together with Dutch specialists to give desmoid patients the best patient care. On our website you can find extensive information (in Dutch), and for questions or advice you can always send us an email.

The Netherlands & Belgium

Contactgroep Desmoid

Primary language: Dutch

Email: desmoid@patientenplatformsarcomen.nl

As part of the bigger platform for sarcoma patients “Patientenplatform sarcomen” in The Netherlands, the Contactgroep Desmoid is a patient group specifically for Dutch desmoid patients.

In the beginning of 2018, three desmoid patients took matters into their own hands and started this initiative for Dutch desmoid patients. Such a group did not exist before, although there was a great need for good and understandable information (in Dutch) and a representation for Dutch patients abroad. Now we represents Dutch patients in the Netherlands and Belgium and works together with Dutch specialists to give desmoid patients the best patient care. On our website you can find extensive information (in Dutch), and for questions or advice you can always send us an email.

Belgium

Cum Cura vzw

Primary language: Dutch

Email: info@cumcura.be

Cum Cura is the umbrella organization for those affected by rare, benign, and malignant bone and soft tissue tumors. As a key resource for desmoid patients, we aim to enhance their quality of life by providing essential information, support, and testimonials from patients and their loved ones.

Europe & International

Sarcoma Patients Global Network (SPAGN)

Primary language: English

Email: info@sarcoma-patients.eu or christina.baumgarten@sarcoma-patients.eu

Founded in 2009, Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national Sarcoma Patient Advocacy Organizations. Today, approx. 60 member groups from five continents gather under the umbrella of SPAGN, which provides a common, international, and influential patient voice for sarcoma patients around the globe. SPAGN is working to improve the treatment and care of sarcoma patients through information and support, and by increasing the visibility of sarcoma with policymakers and the public.

Europe & Latin America

The SELNET Project

Primary language: Spanish

The SELNET Project seeks to create a European and Latin American multidisciplinary network of clinical and translational specialists to improve diagnosis and clinical care in sarcomas, with the aim of validating a collaborative model replicable in other rare tumors and in other countries.

Europe & Latin America

The SELNET Project

Primary language: Spanish

The SELNET Project seeks to create a European and Latin American multidisciplinary network of clinical and translational specialists to improve diagnosis and clinical care in sarcomas, with the aim of validating a collaborative model replicable in other rare tumors and in other countries.

France

SOS Desmoïde

Primary language: French

Email: association.sos-desmoide@laposte.net

Created in 1998, this France-based organization seeks to break patients’ isolation, collect and circulate knowledge about the disease, and stimulate research. This means, in particular, providing information and psychological support to patients; circulating data and initiating multi-disciplinary meetings of researchers and physicians; prompting new research programs; involving patients in the designing of programs and the collection of tissues.

Read an article about the impact of SOS Desmoide.

Germany

sos-desmoid e.V.

Primary language: German

Email: info@sos-desmoid.de

Sos-desmoid e.V. was founded in 2009 as a charitable organization in Mannheim, Germany. (The foundation of the group was initiated by Prof. Peter Hohenberger (Mannheim University Medical Center, Germany).

It is the German organization for desmoid tumor patients, their relatives, and experts who are interested in the research and treatment of this disease. Sos-desmoid e.V. provides medical information and offers the possibility to get in contact with other people affected by desmoid tumors. Besides the national work of the organization, sos-desmoid e.V. puts its focus on international collaboration and exchange with patients, patient organizations, and global medical experts.

India

Sachin Sarcoma Society

Primary language: English

Email: support@sachinsarcomasociety.org

Sachin Sarcoma Society (SSS) is a non-profit organization founded in 2018 to support sarcoma patients globally. Led by a team of survivors, patients, and caregivers, SSS offers comprehensive support, education, and guidance to those affected by sarcoma, desmoid tumors, and GIST. Through specialized support groups, financial assistance, logistical support, and medical aid provision, SSS aims to empower patients and caregivers on their journey to recovery. With a strong presence both within India and internationally, SSS connects patients with specialists, survivors, and resources to ensure they receive the necessary care and support. Committed to making a meaningful impact, SSS continues to advocate for sarcoma awareness, research, and patient-centered care.

Italy

The Italian Desmoid Tumor Association (Associazione Italiana Tumore Desmoide)

Primary language: Italian

Email: desmoide.info@gmail.com

The Italian Desmoid Tumor Association is a new organization, in the start-up phase, which aims to create and develop a network of active and supportive patients. It focuses on collaboration with doctors who specialize in this disease, such as Dr. Alessandro Gronchi and his team based in the National Cancer Institute of Milan, to spread more information and updates about the disease and scientific research progress.

– Psychological assistance and aid during the diagnostic and therapeutic path, and collaboration with other international organizations to safeguard and protect the rights of patients with desmoid tumors.