RARE Concierge
Patient Services
A free service for patients, caregivers, and healthcare providers.
Contact a Patient Services GuideWhat is RARE Concierge Patient Services?
Our RARE Concierge patient service guides are here to help you navigate the complicated world of rare and undiagnosed diseases. No matter where you are in the world, your journey, or what your unique need is, RARE Concierge can help you.
Our team has decades of personal and professional experience in rare disease advocacy and support. As patients, caregivers, and advocates, we understand the challenges you and your family face.
Hope. It’s in our genes.™
RARE Concierge can provide resources, education, and important connection free of charge, including:
* Offering support and understanding
* Connecting to the rare disease community
* Help getting to a diagnosis
* Finding a specialist or care resources
* Understanding research or clinical trials in your disease
* Locating social, emotional, or mental support
Our RARE Concierge 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.
Personalized Support
One-on-one navigation service* that provides introduction and access to resources and tools you need to support you and your family, for as long as you need.
Trustworthy Resources
We have a comprehensive network of trusted resources to address your unique needs.
People Who Understand
Through our lived experience and professional training, we understand both the day-to-day challenges and the importance of communicating complex medical and scientific information in a way that is easily understood.
* Global Genes’ RARE Concierge is not a case management service provider, but can connect you with an organization who can help you with traditional case management.
Resources
We encourage you to explore our resources below featuring information about some of the frequently asked questions that RARE Concierge receives.
Getting to a Diagnosis
- Genetic Testing: Is This My Path to a Diagnosis?
- Get an introduction to genetics and genetic testing. Advances in genetic testing are rapidly changing the way patients are being diagnosed and treated and providing new hope to patients with rare, genetic diseases.
- Toolkit
- Toolkit for the Undiagnosed
- Have you been searching for answers from many physicians and caregivers? The goal of this toolkit is to move you from feeling afraid and anxious to feeling prepared, confident and educated on how to manage the next steps in your healthcare journey.
- Toolkit
- Managing When There is No Diagnosis or Prognosis
- How a Genetic Counselor Can Help You
Financial Resources
Our RARE Concierge team has created a list of financial resources for families, including Health Coverage, Organizations Providing Financial Assistance, Medication Assistance, Medical Transportation, Non-Medical Bills and Individual Fundraising.
Access the Financial Resources List here.
Raising Awareness
Mental Health
- Mental Health & Self Care Resource List
- Patients and caregivers living with rare diseases experience higher levels of stress, anxiety and depression. Global Genes created this list of mental health and self-care resources to help rare community members get support to cope with complex, chronic and often life-threatening conditions.
- Toolkit
- Managing Mental Health, Ambiguous Grief & Progression of Disease
- Supporting Your Community’s Mental Health
- Mental health professionals, industry partners and rare parents discuss mental health challenges faced by rare families and highlight support programs provided by rare disease advocacy organizations.
- Video from 2023 RARE Advocacy Summit
Clinical Trials
Search for clinical trials for your disease of interest:
The following clinical trials search tool is hosted by an external provider. Content and results are managed independently
We Can Help
Contact our patient service guides to get your questions answered or to connect to others.
The content on this page is made possible by grants from
