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 annual Virtual Global Desmoid Tumor Roundtable meeting held in the fall annually 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?
Australia
Australian Desmoid Tumor Support Group
For patients and caregivers living in Australia.
Online Community for Patients & Caregivers
Canada
Canadian Desmoid Support Group
For patients and caregivers living in Canada.
Online Community for Patients & Caregivers
Belgium & the Netherlands
contactgroep desmoid (lotgenotencontact)
For patients and caregivers in the Netherlands and Belgium.
Online Community for Patients & Caregivers
German Speaking
desmoid erkrankte-agressive fibromatose
For German-speaking patients and caregivers.
Online Community for Patients & Caregivers
United Kingdom
Desmoid Fibromatosis Patients & Caregivers UK
Shares the latest links and news from social media regarding desmoid tumors in the United Kingdom.
Online Community for Patients & Caregivers
German Speaking
Desmoid Tumor (Aggressiver Fibromatose)
For German-speaking patients and caregivers.
Online Community for Patients & Caregivers
Ireland
Desmoid tumour support group Ireland
For patients and caregivers living in Ireland.
Online Community for Patients & 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.
Online Community for Patients & Caregivers
Brazil
Desmoide
For patients and caregivers living in Brazil.
Online Community for Patients & Caregivers
Norway
Desmoide tumors, fibromatose- Skandinavia
For patients and caregivers living in Norway.
Online Community for Patients & Caregivers
Spanish-Speakers
DESMOIDE… LAS VOCES DE LOS GUERREROS
For Spanish-speaking patients and caregivers.
Online Community for Patients & Caregivers
U.S. & International
F.A.P (Familial Adenomatous Polyposis)
For FAP patients and caregivers.
Online Community for Patients & Caregivers
Poland
Guzy desmoidalne – FIBROMATOZA
For patients and caregivers in Poland.
Online Community for Patients & Caregivers
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.*)
Online Community for Patients & Caregivers
U.S. & International
Wee Little Warriors- Juvenile Desmoid Tumor Patients
For caregivers of pediatric patients.
Online Community for Patients & Caregivers
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.
Online Community for Patients & Caregivers
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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.
International Desmoid Tumor Patient Advocacy Group
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!
International Desmoid Tumor Patient Advocacy Group
