What 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.
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
* Identifying financial resources to help with treatment, travel, or care
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.
One-on-one patient navigation service that provides the information you need to support you and your family, for as long as you need
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.
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
Getting 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.Genetic Testing Toolkit
Become an Empowered Patient
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.A Toolkit for the Undiagnosed
Good Decisions are the Best Medicine
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.Becoming An Empowered Patient: A Toolkit For The Undiagnosed
Looking for Answers in Uncertainty
This session from the 2018 Patient Advocacy Summit tackles a topic that is all too common in the rare disease community: managing symptoms, lifestyle and mental health when there is no diagnosis or prognosis.Managing When There is No Diagnosis or Prognosis
How a Genetic Counselor Can Help You
Your genetic counselor will work with you and your doctor, help answer questions and explain hard information, and help you find ways to pay for tests.How a genetic counselor can help you
Understanding & Navigating Medicare
In addition to the physical, mental, and emotional hardships of living with a rare disease, the costs can be astronomical. One way to ease this burden is to take full advantage of the Medicare benefit programDownload Toolkit
Understanding Career Opportunities & Employment Benefits
Employment benefits you receive can provide you and your family with an important financial safety net. This toolkit is designed to help you evaluate benefits that will best suit your abilities, healthcare needs and financial resources.Download Toolkit
Finding Your Fundraising Strategy
Want to make change in the fundraising world? It is our hope that the personal stories, resources, tips, and suggestions for self-reflection in this guide will be the path to making change for your rare disease more manageable.Download Toolkit
Use Storytelling to Raise Awareness
Many in the rare disease community don’t know the impact they can have by sharing their story. Telling your story can be difficult, but this toolkit can offer advice on ways to get started.Download Toolkit
A Guide to Public Speaking
Whether you are standing on a stage with a microphone or on a street corner with a megaphone, feeling confident about your public speaking skills is critical to your message.Download Toolkit
Promote Your Story Through Social Media
This toolkit will help storytellers bring greater awareness to their personal journeys by taking advantage of social media. We focus on the value, use, and practical application of social media
to promote our stories.
Mental Health & Self Care Resources
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 the support they need to cope with these complex, chronic and often life-threatening conditions.Learn More
Managing Mental Health, Ambiguous Grief & Progression of Disease
In this session from the 2021 Patient Advocacy Summit, panelists share their perspectives on opportunities to expand mental health resources in the rare disease community and break down barriers to accessible care and resources.Watch Video
Supporting Your Community’s Mental Health
During the 2023 RARE Advocacy Summit, this panel of 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.Watch Video
We Can Help
Contact our patient service guides to get your questions answered or to connect to others.