Patient Support Networks
Coping with the Diagnosis
Patient Support Network
Community Support Resource Links:
FAP Facebook Groups
There are several FAP groups on Facebook, below are some the most active
Hereditary Colon Cancer Community of Greater Michigan (Private Group) – open to anyone, anywhere with a hereditary colon cancer syndrome
Familial Adenomatous Polyposis (FAP) (Private Group)
F.A.P (Familial Adenomatous Polyposis) (Private Group)
Living with FAP – Familial Adenomatous Polyposis (Private Group)
FAP (Familial Adenomatous Polyposis) (Private Group)
FAP Gene Support Group (Private Group)
Familial Adenomatous Polyposis Support Group (Public Group)
Familial adenomatous polyposis (F.A.P) Youth Support
In Person and Online Support/Peer Groups
A lot of cancer support communities provide support not only to those who have been diagnosed with cancer but at any stage including previvorship and survivorship.
Cancer Support Community of Greater Ann Arbor Hereditary Colon Cancer Syndrome Peer Group (online) Many FAP patients attend virtually. Cancer diagnosis is not a requirement for attendance, many participants are considered to be previvors or have not required to undergo surgery yet for FAP – Register for the Peer Group
FORCE – Hereditary Cancer Support Groups (online) that are specialized for various populations including rare mutations such as FAP, Patients and Caregivers, Men’s group, Previvors, Spanish, LGBTQIA+, Black, African American Communities, and Young Previvors. Cancer diagnosis is not a requirement for attendance
FORCE Peer Navigation Program provides 1:1 Peer Support that includes a request to be matched to a volunteer by several factors including gene mutation
Men’s Rare Disease Mental Health Group hosts support groups specifically for men with rare disease. To attend, email Me***************@***il.com
Raregivers is a global network providing support and resources to patients, caregivers, and professionals in rare, chronic, and complex disease communities
Smart Patients is an online platform providing communities for various conditions, including FAP and Short Bowel Syndrome, with a focus on patient insight, evidence-based practices, and furthering patient education
Cancer Support Community has a wide array of educational, community, and support resources and programs available throughout the United States that are in person and virtually for patients including previvors, cancer survivors, and caregivers
Cancer Care has several support and education programs available including connecting with oncology social workers, support groups, and community programs including specialized programs for Children/adolescents, Parents, Young Adults, Older Adults, Caregivers, Men, LGBTQ+, Marginalized Groups, Patients including Previvors, and Survivors
Man Up To Cancer provides a variety of programs with 50 chapters to support men living with cancer
Wellspring provides in person and online support and activities to patients and family members with dedicated spaces to diverse communities including 2SLGBTQI+
Queering Cancer provides information for providers and patients as well as community support, and resources for sexual and gender diverse people affected by cancer with a team made up of community partners, clinicians, and researchers from the 2SLGBTQI+ community. Resources and support are available are not limited to Canada
OUTpatients provides online and in-person support group meetings and community events for patients of any LGBTIQ+ identity and caregivers in the UK
FAP Personal Stories
God is Good: A Journey to Complete Trust by Caroline B Moody
FAP Organizations Worldwide
FAPA – Familial Adenomatous Polyposis Association based in Belgium to provide education and support to patients and medical professionals for FAP and Lynch Syndrome
AEAPAF – Spanish Association of People Affected by Familial Adenomatous Polyposis nonprofit organization based in Spain to provide education, support, and patient registry in Spain
Ostomy Support
For those in the United States who have undergone surgery for an ostomy, are preparing to undergo ostomy surgery, or have had an ostomy reversed – there are support groups in every U.S. state through the United Ostomy Associations of America
For those in Canada who have undergone surgery for an ostomy, are preparing to undergo ostomy surgery, or have had an ostomy reversed – there are peer groups and support programs online and throughout Canada through the Ostomy Canada Society
The International Ostomy Association is made up of ostomy associations around the world from several countries and advocates for ostomates at all levels
Ostomy 101 provides a wealth of information and resources, including virtual classes for learning life with an ostomy
WOCN Society offers a wealth of education and patient resources for ostomates including locating a Wound, Ostomy, Care Certified Nurse
If you’re needing help obtaining ostomy supplies or have a surplus you no longer need, the following resources may be of help:
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- Your Local Hospital’s Wound Care Ostomy Closet
- Ostomy 101
- Kindred Box
- Ostomy 211
- Pouches of Love
- Friends of Ostomates Worldwide – USA
- Osto Group
- Kinder’s Closet Ostomy Pantry
- Western Florida Ostomy and Tubefeeding Group
- Your Local UOAA Chapter
- Ostomy Manufacturer Assistance Programs
- Medical Monks
- UOAA Emergency Supply Resources
Child and Teen Support
Make-A-Wish grants wishes for children with FAP
For minors with bowel or bladder conditions (such as FAP), summer camps specifically designed for them can be a valuable and enjoyable experience
The Youth Rally is an incredible program for those ages 11-17 from around the world that is hosted at a different U.S. college campus every year that provides education, independent living skills, support, and fun for campers. All counselors have also experienced their own bowel or bladder condition and ostomy nurses are available to provide education and support
Ostomy Canada Youth Camp is another incredible program for up to 50 Canadians aged 9-18 with medical conditions and is held each July at Easter Seals Camp Horizon near Bragg Creek, Alberta. The camp also focuses on education, independent living skills, support, and fun for campers. Camp volunteers are made up of medical professionals and mentors, including specialized ostomy education and support.
About Kids GI by IFFGD focuses on information about chronic GI disorders specifically for children including locating a pediatric GI specialist
Young Adult Support
Young Adult Cancer Connection offers support and resources for young adult cancer patients, survivors, and their caregivers
RARE Youth Revolution focuses to empower young adults and their families with rare disease by providing content surrounding rare disease and helping young adults find their voices to be advocates in the rare disease space
Young Adult Cancer Canada supports young adults in Canada living with, through, and beyond cancer through programs online support, community events, support groups, conferences, and more.
Desmoid Education, Care, and Support Resources
Desmoid Tumor Research Foundation
Gastrointestinal Disorders Education, Care, and Resources
IFGD provides a wealth of information about chronic GI disorders to help understand and treat chronic conditions as well as help locating Registered Dietitians and GI Specialists
Short Bowel Syndrome provides information and resources including a Provider Locator
Short Bowel Syndrome Nutrition Guidelines
Genetic Counselors and Healthcare Providers
National Society of Genetic Counselors has a directory for the US and Canada
CGA-IGC has a directory to locate GI Cancer Genetic Clinics
MediFind provides a directory to locate doctors of any specialty
FORCE provides a walk through about genetic testing including how to obtain genetic testing and financial assistance
Global Genes provides the following guides for when seeking care under a genetic counselor.
Thyroid Cancer Support
ThyCa: Thyroid Cancer Survivors’ Association
Stomach (Gastric) Cancer Support
Esophageal Cancer Support
Esophageal Cancer Action Network
Esophageal Cancer Education Foundation
The Salgi Esophageal Cancer Research Foundation
Pancreatic Cancer Support
Pancreatic Cancer Action Network
National Pancreatic Cancer Foundation
Bile Duct (Cholangiocarcinoma) Cancer Support
Gallbladder Cancer Support
Liver Cancer Support
Adrenal Cancer Support
Brain Tumor Support
American Brain Tumor Association
Assistance Programs
NORD RareCare® Patient Assistance Programs
Additional Rare Disease Resources
National Organization for Rare Disorders®
Canadian Organization for Rare Disorders
Every Life Foundation for Rare Diseases
Health Platform Programs
Coping with the Diagnosis
What to Do After Receiving the News
Receiving the news of even possibility having FAP is understandably daunting and even more so when receiving a positive diagnosis.
Mental health is an important aspect for quality of life and navigating any chronic illness, but especially a rare disease. Due to this and personal experiences, we recommend seeking mental health counseling upon diagnosis not only for individual counseling but also family counseling as a diagnosis and what FAP can entail affects not only the patient but also their surrounding family unit.
Obtaining mental health counseling not only helps to process the many emotions that one may experience throughout their medical experience with FAP but aids in teaching adaptive coping tools and mechanisms. Some individuals experience a lot of anxiety from the ongoing cancer risks associated with FAP that is particularly triggered leading up to and while waiting for pathology results from their routine surveillance procedures. This type of anxiety is often referred to as scanxiety and is a common experience. Depression is another common experience with any chronic illness as an individual’s experienced norms change in a variety of possible ways and it can be difficult to adjust to such changes, especially if changes are not expected.
Some individuals experience medical trauma that may lead to medical PTSD based on their experiences. When trauma has been experienced, trauma focused therapies such as EMDR and Trauma-Focused ACT are particularly useful in processing and managing trauma symptoms to decrease disturbance levels.
Your provider may have mental health counselors that they recommend, and your insurance company can also provide a list of in-network counselors to choose from. If financial burden is a concern, your local community may have free or sliding scale counseling organizations available.
Support groups are another great resource for helping to process the emotions that can accompany FAP. While the number of support groups specifically for FAP are limited, there are many support groups available in person and online for general to specific health conditions, cancer, and depression/anxiety/ptsd that can be helpful.
The Cancer Support Community of Greater Ann Arbor hosts a monthly Hereditary Colorectal Cancer Peer Group that is a hybrid group of in person and online. This is a great peer group with many FAP patients and family members involved.
For those who have undergone surgery for an ostomy – even if it has been reversed – there are ostomy support groups in every U.S. state through the United Ostomy Associations of America.
For teens who have bowel or bladder conditions (such as FAP), The Youth Rally is an incredible program for teens throughout the world to attend. The Youth Rally is a summer camp that is hosted at a different U.S. college campus every year that provides education, independent living skills, support, and fun for campers. All counselors have also experienced their own bowel or bladder condition.
Under community resources is a list of more cancer and rare disease specific peer support.
Additional general mental health support groups available include:
Explore Awareness Avenues
Life’s a Polyp with Zeke and Katie
