Additional Resources & Support Groups

You are not alone in dealing with skin cancer

Listed here are a few sources of information and support you might find useful. These groups are not connected to Save Your Skin Foundation. We are providing the links as useful sources of information but do not monitor content for accuracy and quality.

Clinical Trials in Canada

 

Clinical Trials: What Patients Need to Know

Webinar held February 9, 2017  With Dr. Natasha Kekre, Associate Scientist, Clinical Epidemiology Program, Ottawa Hospital Research Institute

This webinar informs patients about clinical trials: where to find information about them, what their purpose is, how they work, who is eligible, and why one should participate.  This webinar discusses the important position clinical trials hold in the treatment of cancers and other illnesses and provide the patient with information regarding the process of finding and participating in clinical trials, their eligibility for clinical trials, and any other questions they might have.  Missed the webinar? Listen to a recording of the presentation here

Patients now also have access to a digital cancer registry where they can get information on what trials are being conducted and where, click here to learn more.

 

Canadian Cancer Trials
Patients may wish to consider taking part in a clinical trial when they are offered treatment for their cancer. All new treatments must be tested in a clinical trial before they are approved by Health Canada. This site was created by the Canadian Partnership Against Cancer and its partners to help you learn about clinical trials for cancer.

Health Canada’s Clinical Trials Database
Health Canada, through its Clinical Trials Database, is providing to the public a listing of specific information relating to phase I, II and III clinical trials in patients. The database is managed by Health Canada and provides a source of information about Canadian clinical trials involving human pharmaceutical and biological drugs.

National Cancer Institute’s Clinical Trials
Clinical trials are essential for moving new methods of preventing, diagnosing, and treating cancer from the laboratory to physicians’ offices and other clinical settings. NCI has a broad array of programs that support clinical research, including programs that facilitate the development of new interventions, from the initial creation of candidate drugs in the lab to final testing in late-stage clinical trials.

Additional Resources

 

Canadian Skin Patient Alliance

Save Your Skin Foundation is an affiliate member of Canadian Skin Patient Alliance (CSPA). CSPA serves as an umbrella organization for Canadian not-for-profit patient groups and organizations that deal with skin conditions and diseases. By working together, we can strongly advocate for the needs of skin patients across the country and provide comprehensive education and support.  Skin patients and their families benefit by becoming part of a bigger community and gaining access to information about treatment, care and research in skin disease.

 

Canadian Cancer Society 
The major national organization in Canada for all types of cancer information and support. They also have provincial organizations.

 

NEW!  June 2017:  A Distillation of Melanoma Statistics, from the Canadian Cancer Society Documents Canadian Cancer Statistics 2017

To read the full reports on Canadian Cancer Statistics, produced by Canadian Cancer Society, Statistics Canada, Public Health Agency of Canada, Provincial/Territorial Cancer Registries, click here for the 2017 report and here for the 2016 report.

 

Canadian Skin Cancer Foundation

We are a member of a network of organizations dedicated to improving accessibility to treatments for patients diagnosed with skin cancer. 

 

Melanoma Network of Canada
The Melanoma Network of Canada is a national, patient-led charity whose mission is to provide melanoma patients and their caregivers with current and accurate information and services in the fight against melanoma.

 

Shade Foundation of America 
The Shade Foundation of America describes itself as “The Children’s Skin Cancer Education & Prevention Foundation.” Based in Washington, DC, is the only national U.S. children’s foundation devoted to skin cancer education and prevention. The site includes activities and resources to educate kids about protecting their skin.

 

National Cancer Institute (Skin Cancer) 
The National Cancer Institute (NCI) in the U.S. is part of their National Institutes of Health (NIH). The NCI coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients. The link above is to their homepage about skin cancers.

 

The Skin Cancer Foundation 
Based in New York City, The Skin Cancer Foundation was founded in 1979 and works to educate the public and the medical profession about skin cancer, its prevention by means of sun protection, the need for early detection, and prompt, effective treatment. It is the only international organization devoted solely to combating skin cancer.

 

Aim at Melanoma 
AIM at Melanoma is globally engaged and locally invested in advancing the battle against melanoma through innovative research, legislative reform, education, and patient and caregiver support.

 

Melanoma Research Foundation 
Committed to the support of medical research in finding effective treatments and eventually a cure for melanoma, the MRF also educates patients, caregivers and physicians about the prevention, diagnosis and treatment of melanoma.

 

Melanoma International Foundation 
Established in 2003, the Melanoma International Foundation (MIF) is a non-profit organization created to provide the scientifically sound guidance and support.

Support Groups

 

Cancer Hope Network  
Founded as CHEMOcare in 1981 and based in New Jersey, Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and/or their family members. They do this by matching patients and family members with trained volunteers who have themselves undergone and recovered from a similar cancer experience.

 

Cancer Support Community 
Calling itself “A global network of education and hope, the Cancer Support Community is based in Washington, DC, and runs various programs and activities to achieve its mission of ensuring “that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.”

 

CancerCare 
One of the older groups for cancer patients, CancerCare was founded in 1944 and is based in New York. It offers free, professional support services including counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All services are provided by oncology social workers and world-leading cancer experts.

 

Faces of Skin Cancer 
Faces of Skin Cancer gives people affected by advanced skin cancer a place to share their stories and help others understand what it really means to live with this disease. It includes video, audio and written stories that highlight different emotional and physical aspects of advanced skin cancer. Visitors can show support by sharing the stories with others and submitting their own stories.

 

Aim at Melanoma 
AIM at Melanoma is globally engaged and locally invested in advancing the battle against melanoma through innovative research, legislative reform, education, and patient and caregiver support.
Contact US: Valery Guild – Vguild@aimatmelanoma.org

 

Melanoma Patients Australia 
Melanoma Patients Australia is the only patient driven non profit organisation that offers a national network of support and information to patients, their families, carers, and friends, about melanoma prevention, diagnosis, management and treatment.
Contact: Hayley Andersen – Hayley@melanomapatients.org.au

 

Melanoma Brasil 
Melanoma Brazil is made up of volunteers who are willing to contribute their time and expertise in the dissemination and awareness of skin cancer through various campaigns, to provide information and support for everyone.
Contact: Rebecca Montanheiro – Melanomabrasil@gmail.com

 

Melanoma Uruguay/LatinoAmerica 
The Association Melanoma Uruguay/Latin America is a support group for patients diagnosed with melanoma. It was born in February 2015 from the collaboration of “Aim at Melanoma,” which for more than a decade have helped people diagnosed and fighting melanoma.
Contact America Latina: Claudia Piazza Cidonio – claudia.cidonio@aimatmelanoma.org

 

Melanoma UK 
Melanoma UK is a patient support and advocacy group, dedicated to helping melanoma patients during all stages and fundraising to provide melanoma nurses and research.
Contact: Gill Nuttall – Gillian.nuttall@melanoma.org.uk

 

Melanoma Action & Support Scotland (MASScot)
Melanoma Action and Support Scotland (MASScot) offers support to patients with melanoma and non-melanoma skin cancer and their carers.
Contact: Leigh’s – leigh@masscot.org.uk

 

Melanom Deutschland 
Melanoma Germany is a nonprofit organization for those looking for more information and assistance about melanoma.
Contact: Madison Garrett – madison@aimatmelanoma.org

 

Melanome France 
The aim of Melanome France is a  better understanding of melanoma, and to make treatments available to help patients in France.
Contact: Gilly Spurrier – Gilliosa@melanomefrance.com

 

Melanoma Italia 
Melanoma Italia provides up to date information about the disease and support to patients.
Contacts: Chiara Puri Purini – Chiara.puripurini@melanomaitalia.org or Claudia Cidonio: claudia.cidonio@aimatmelanoma.org

 

Portuguese Melanoma Intergroup 
The Portuguese Melanoma Intergroup (IPM) is a medical society, non-profit made up of professionals from different disciplines interested in the study, diagnosis and treatment of melanoma.
Contact: Maria Jose Passos – Passos.m@gmail.com

 

Melanoma España 
Melanoma España is a new Facebook Page created by a group of specialists and an American non-profit association to answer the most common questions that patients and their family have when diagnosed with Melanoma or have a recurrence.
Contact: Virginia Aznar de Carillo – virginia.aznar@mfar.net


Making awareness and education available is crucial. Since 2006, the Foundation has worked to raise awareness of melanoma and non-melanoma skin cancers focusing on education, prevention and the need for improved patient care.
Show Buttons
Hide Buttons