Diagnosed or undiagnosed. Connected or just starting your journey. Empowered or overwhelmed. Our Patient Services Guides are here to provide resources and make connections – to hold your hand until we’re able to connect you with resources. 

Our Patient Services Guides understand what it is like to navigate the complicated and complex world of rare diseases and are here to help. This service is free for patients, caregivers, and healthcare providers. We hope you’ll contact us so we can help.

Who is Patient Services for? 
Our Patient Services Guides are here to help those living with an undiagnosed or diagnosed rare disease and those who help care for them, whether you are a caregiver/care partner or health care provider.

What can a Patient Services Guide help with? 
Patient Services Guides know that living with a rare disease is challenging, frustrating, and exhausting. We are here to assist on your rare disease journey! We can help connect you to trusted information and resources about:

  • Identifying clinical trials/research studies
  • Offering disability, financial, and mental health resources
  • Insurance coverage for newborn screenings and genetic tests
  • Finding a doctor, specialist, or center of excellence
  • Locating genetic counseling services
  • How do I get a genetic test?
  • Why is it important to know my family health history?
  • Determining whether gene testing exists for a specific rare disease
  • Getting a diagnosis
  • Have I been misdiagnosed?
  • Finding support while getting a diagnosis
  • Where can I find support if I’m not diagnosed?
  • Connecting to patient advocacy organizations
  • Raising awareness for specific rare diseases

If you have other questions about Global Genes (events, partnerships, etc), please visit our Contact Us webpage.

How do I contact a Patient Services Guide? 
Complete and submit the confidential form below, and a Patient Services Guide will provide you with a personalized response within 2-3 business days that will include information, resources, and connections that address your specific needs.

Please Note:
* Our Patient Services Guides provide information about rare diseases for your general knowledge and are not a substitute for a doctor’s advice. If you are having a medical emergency or need medical advice, please speak with your doctor. 

* Our privacy policy can be found here