Resources

Our Team has created a list of resources that we hope you will find useful. Please review them with your care team before using these to ensure the entails apply to you and your families when applicable.

Caregivers / Care Partners

  1. Rare Caregivers Guidebook (National Alliance for Caregiving) 
  2. Resources for Caregivers across the Lifespan
  3. Caregiving at home: A US based guide to community resources 
  4. US Specific: Find caregiving assistance and services in your state 
  5. Care and Support (NHS)
  6. Getting Support if you care for someone: Services Australia

Genetics & Cancer

  1. Genetic Testing: Getting to a diagnosis 
  2. How a Genetic Counselor can help you
  3. Diagnosis or No Diagnosis – What to do next?
  4. Making informed and share decisions about Genetic testing and clinical trials

Healthcare / Genetic Testing / Region Specific Resources

US Specific Resources on Navigating Healthcare Coverage

  1. Understanding and Navigating Medicare 
  2. Understanding and Navigating Medicaid
  3. How to Access and Maintain Social Security Benefits
  4. Navigating the U.S. Health System for Young Adults Guide
  5. Caring for Yourself and Your Children

NHS Genetic Testing

  1. Genetics and Genomic Testing : NHS 
  2. NHS Genomic Medicine Service 
  3. You may be eligible for an NHS Genetic test
  4. Inherited Genes and Cancer Types included in Cancer Screening

Australian Genetic Testing

  1. Clinical Genetic Services per Jurisdiction
  2. Genetic Testing and Life Insurance 
  3. Genetics vs. Genomic Testing

Clinical Trials

Basics of Clinical Trials

  1. Steps to find a clinical trial 
  2. Should you join a clinical trial ? 
  3. Understanding clinical trials

If you have any resources you would like to share with our community or a particular topic you would like to learn more please let us know using the contact us form.

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