RARE Toolkits

Below is a list of all of our current RARE Toolkits.


Resource Guide

Living Independently

Guardian Angels Medical Service Dogs, Inc.: This resource provides information on the steps necessary to obtain a service dog. Guardian Angels also custom trains and chooses the dog most suitable for the recipient’s personal challenges and environment.

ILRU Directory of Centers for Independent Living and Associations: Most counties have independent living centers which provide services to anyone experiencing difficulties in significant life areas due to disability or other chronic conditions. They can assist individuals with obtaining Social Security Benefits, acquiring adaptive medical aids, gaining necessary accommodations to participate in work, accessing vocational training, and finding housing. Use this resource to find your local independent living center.

Kiplinger’s Household Budget Worksheet: When deciding whether moving out is an option, it is important to estimate projected costs and expenses. This worksheet allows users to create a proposed budget.

Medical Alert Systems HQ: This resource provides detailed reviews of the best medical alert systems. It also has a chart for a quick side-by-side review of the systems.

Other Helpful RARE Toolkits

Becoming an Empowered Patient: A Toolkit for the Undiagnosed: This toolkit provides important information on how to create a medical history notebook, obtain medical records, and other steps to become more educated and confident when managing your own healthcare.

Parenting a Child with a Life-Limiting Illness Toolkit: This toolkit provides additional information on Medicare and Medicaid, the value of connecting with other patient advocates, and many other helpful tips and advice when caring for someone with a complex illness.

Reviewing and Finding Physicians

Center for Advancing Health’s Be a Prepared Patient: This directory lists places that can be used to locate physicians and specialists.

Healthgrades: Healthgrades is an online resource for comprehensive information on physicians, hospitals, dentists, and nursing homes.

Vitals: This peer review site allows users to search for physicians, read feedback from other patients, and rate their own experiences.

Transitioning to Adult Medical Care

Florida Health and Transition Services: This website provides a toolbox of transition resources for patients, providers, and families. While some are state-specific, most are useful for youth across the nation.

GotTransition?: This is an information exchange for professionals, families, youth, and policy makers about the move from resource rich systems of pediatric care, particularly for youth with special healthcare needs, to more dispersed and patient-driven adult systems of care. Transition tools, tips and resources are all available.

Healthy Transitions: This website is for youth with developmental disabilities ages 14-25 years, family caregivers, service coordinators, and healthcare providers. Use this site to develop skills for transitioning from pediatric to adult healthcare, improve communication, and build effective partnerships during the transition process. While some are state-specific, most of the resources provided are useful for youth across the nation.

Understanding Health Insurance

Healthcare.gov’s Health Insurance Marketplace Portal: Healthcare.gov provides information about healthcare reform, public insurance and the healthcare marketplace. It also includes links to start applications for many programs, including Medicaid and state and federal marketplaces.

Healthcare.gov’s From Coverage to Care: A Roadmap to Better Care and a Healthier You: This guides those with new healthcare coverage to understand their benefits and connect to primary care and preventive services that are appropriate for them.

Navigating Health Insurance Issues RARE Webinar series: There are many health insurance issues that are unique for patients with rare diseases. This webinar series details points to consider when attempting to overcome obstacles to accessing your insurance provider and appealing their denials.

Seattle Children’s Hospital’s Center for Children with Special Need’ Health Insurance Chart: Use this chart to fill out information and compare health insurance plans easier.

UnitedHealthcare’s Health Insurance 101 Glossary: There are many commonly used insurance terms, like deductible, co-payment, and co-insurance. Use this informative site to read helpful definitions of these and other terms.

United States Department of Labor: The Consolidated Omnibus Budget Reconciliation Act (COBRA) gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time. Read more details about COBRA through this resource.