Planning for the future may seem overwhelming, particularly with the daily complexities and challenges that come along with having a rare disease or caring for someone who does. Small steps can help empower you to take control and be prepared for the often unanticipated costs associated with ongoing care.

The content in this section may not be applicable in all countries.

Financial Planning Guardianship

Financial Planning

What is financial planning?

A method of managing finances to achieve financial goals like buying a house, paying for college, or managing medical care.

Why should I get ready?

  • Medical expenses are often varied and recurring for families impacted by rare disease
  • Preparing for expenses is important for long-term stability in care for rare diseases
  • Putting the right tools and protections in place can help deliver peace of mind for all family members and caregivers

Who can help me?

Certified financial planners (CFPs) can help you make decisions that make the most of your financial resources. There are special needs planners and chartered special needs consultants. One resource to begin your search for a local professional is the Special Needs Answers website. This is an important decision that you should consider carefully; it’s critical to find the right special needs planner for you.

For medicine-related needs, there are patient assistance programs offered by pharmaceutical companies and by nonprofit organizations. Check with your advocacy organization and the company that makes your medicine, pharmacy or physician for guidance; or see if there is an appropriate patient support program to meet your needs.

When do I need to start?


To help you, review the below checklist of common financial situations for rare disease families. Choose those that are most relevant to you and learn more.

Click here to download a document titled Financial Empowerment Strategies for Future Family Security


What is a guardian?

A person appointed by the court to make health care and other financial and/or non-financial decisions for someone who cannot make these decisions for themselves.

Why should I get ready?

  • The law presumes that anyone over 18 years old is able to manage all aspects of their own lives including decisions about health care, money, and education
  • Unless you have guardianship or have made other decision-making arrangements, you will not have the legal right to make any decisions for your loved one after they turn 18, so prior planning is essential and necessary paperwork can take time to develop and execute

Who can help me?

  • A local attorney (laws vary from state-to-state and even county-to-county)
  • Your local advocacy organization or local social services may be able to refer you to a knowledgeable attorney

When should I start?

The guardianship process takes time, so it’s important to start before your dependent turns 18 and factor in that paperwork can take months to develop and execute.

To help you, the below checklist and additional information about guardianship can help you get started and put the appropriate protections in place.

A checklist of six yes or no questions with the title, Do I need to establish guardianship? Click or tap to download the full PDF checklist

Visit these additional resources that feature helpful tools and information:

RARE Webinar: Make Sense of Your Dollars is a recorded webinar with information on money management and budget preparation, presented by finance professionals specifically for families impacted by a rare disease.

RARE Insight: Building a Stronger Financial Future offers practical steps, tips, suggestions, and resources for people seeking further information about building a financial future around a rare disease diagnosis.

Got Transition

Guardianship and Alternatives for Decision-Making Support is a brief that provides a high-level look at guardianship and other decision-making support options for young adults with developmental or medical disabilities and their families.

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