RARE Concierge

Patient Services

A free service for patients, caregivers, and healthcare providers.

Contact a Patient Services Guide

What is RARE Concierge Patient Services?

Our Patient Services Guides are here to provide resources, information, and connections – to be with you on your rare disease journey.

Diagnosed or undiagnosed. Connected or just starting your journey. Empowered or overwhelmed.

RARE Concierge is a service where you can reach out with your unique rare disease-related questions and get information relevant to your needs. Our Patient Services Guides understand what it is like to navigate the complex world of rare diseases and are here to help. This service is free.

Our team 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

How do I contact a Patient Services Guide?

Complete and submit the confidential form, and our Patient Services Guides will provide you with a personalized response within 2-3 business days that will include information, resources, and connections that address your specific needs at no cost to you.

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. 

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We Can Help

Contact our patient service guides to get your questions answered or to connect to others.