RARE Toolkits

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




Numerous patients in the rare disease community are among the more than 50 million people who undergo surgical procedures in U.S. hospitals each year. If you or your loved one is contemplating a surgical procedure, this toolkit is designed to provide information and resources that will help ensure a safe and successful experience before, during and after an operation. It also will share steps to help individuals decide if surgery is the best option, the questions to ask the surgeon and care team before and after the surgery, a simple surgical checklist, and direct advice from other patient advocates.      

Outpatient surgery has grown in the past decade, and now there are more surgeries performed in outpatient locations, such as in a surgical center, compared to in hospitals. While most patients and families prefer to return home the same day, this means families are often managing the recovery process without the help and support of hospital staff.

Modern day surgery is a group effort and patients are vital members of the surgical team, especially when they have the information and basic skills to ask the right questions and work in partnership with their health care providers.

What Does it Mean to be an Active Participant in the Surgical Process?

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“I am definitely an active participant in my son’s surgeries,” says Lori Davis, mother of a child with Osteopetrosis. “After his first surgery, it became apparent that our surgeries were not going to follow the normal surgical protocol and that our involvement as parents would be necessary. Sometimes, the medical professionals forget that the disease you are dealing with is 'rare' therefore the complications, side effects, and recovery may be quite different from anything they have seen in previous patients. And we, as parents, need to be the reminder for them to slow down and look at the situation from a rare disease perspective.”


Often, the first step in being an active participant is deciding if surgery is in fact the best option for you. The American College of Surgeons recommends asking the following questions first:

  • Why do I need this operation?
  • Are there other treatment options, and is this the best option for me?
  • What are the risks, benefits, and possible complications for this operation?
  • Will my health history and the medications I currently am taking mean that the possible risks, complications, and benefits will be different for me?


Access the American College of Surgeons for the complete list of questions to consider when contemplating surgery.