RARE Toolkits

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


Independent Living

The everyday tasks of independent living can present unique challenges for people managing a rare disease, but with sufficient assistance and social supports in place, they can enjoy many opportunities and liberties in their everyday lives. Before making any arrangements to move out, however, consider whether moving out is the right choice.

Deciding to Move Out

There are a myriad of reasons why someone can’t or shouldn’t move out of their family home when they have a chronic or debilitating illness. But for many young adults, the need for independence outweighs many of the obstacles and responsibilities that come with having their own space.

Quote Mark

“Being independent doesn’t mean breaking connections with your family and others that have supported you when you were younger. In fact, knowing how and when to ask for help is as important as knowing how to handle things yourself.”


Maya Doyle

Senior Social Worker, Children’s Hospital at Montefiore

When deciding whether it is time to move out of the family home and into a new residence (an apartment, a college dorm, or a house), consider the following questions:

● Can I handle the day-to-day management of my disease? Rare diseases, like other illnesses, can have multiple symptoms that are often difficult to manage independently. They can fluctuate or grow worse. Weigh if the prognosis is favorable, if the symptoms are manageable, and if resources and support are available at the new residence when deciding to move out.

• Can I afford to pay my rent, utilities, and general costs of living? Before moving out on your own, calculate the costs to make sure you can afford the monthly expenses. If you are unable to cover these on your own, review your options (if your family can help, if you can get a roommate, etc.) and see if moving out is still within reach. Use Kiplinger’s Household Budget Worksheet to create a proposed budget.

● Do I have the physical energy to clean my own home, shop for groceries, prepare meals, manage my expenses, etc.? In addition to monthly monetary expenses, there are regular physical demands associated with living independently. Consider whether the time and effort to get these activities done are within reach. And if not, see if other options are available.

● If I have a relapse or flare up, will I be able to get assistance from others? Sometimes it is nearly impossible to prevent or even predict when symptoms will worsen, so take preemptive measures and look for new residences that are within reach of family, friends, or other support networks.

15 Tips For Living With A Chronic Illness or Chronic Pain
Katie, a young adult with a chronic illness, offers 15 tips for those living with a chronic illness or chronic pain.

Remember, with enough planning and support, you can ascertain the kind of autonomy that you want. And while there may be periods when returning home seems like the only option, it’s completely natural to struggle with finding the right balance of living independently while managing a complex illness.


Preparing for Emergencies

Living independently is not always an option for some individuals, but advances in technology have enabled many to manage their own care and feel comfortable living on their own. Some of these include:

Communication Devices: While there are many systems on the market that allow the disabled and elderly to have a one-click remote to signal emergency services (see the Resource Guide), there are also a variety of other electronic tools that can make the uncertainty of living without a partner, family member, or roommate a lesser fear. A good example is a cell phone. By keeping one on your person at all times, you will always have a way to call for help.

Non-Ambulatory Transportation: Young adults should consider living within driving range of family members or friends who will be able to take them to doctor appointments or the hospital if they are unable to drive but don’t require the urgency of an ambulance. Research the availability and eligibility for paratransit services from the community or your medical center.

Readily Available Supplies: It is recommended that those with debilitating illnesses live in a single-story environment. However, if this is not an option, consider keeping a set of emergency supplies such as medications, catheters, nutritional supplements or sports drinks, and assistive walking devices on each floor.

Service Animals: Many young adults gain their independence by choosing to live with a service animal. These well-trained dogs can have a variety of skills, such as being able to guide the blind, fetch supplies, alert people who are deaf, pull a wheelchair, alert others when someone is having a seizure, warn a patient about an impending medical episode they may not be aware of, and calm individuals who are experiencing a panic attack. Learn more about obtaining a service dog through Guardian Angels Medical Service Dogs, Inc..

Home Health Aides & Nurses: Many companies offer home services in which nurses and aides come to your home. Aides can help with many activities like bathing, preparing meals, light household cleaning, bathroom services, grocery shopping, laundry, or transportation. They don’t have to live with patients full-time and can come instead for several hours a day or a few hours a week. Visiting nurses (an RN or LPN) can assisted with “skilled needs,” such as administering medications, nutrition, or other treatments; catheter care and dressing changes; or other medical care. Work with your doctor and social worker, and/or call the customer service number on the back of your insurance card to learn more about selecting a nurse or home health aide that is covered by your insurance.