Tips for Finding Financial Aid: Genetic and Rare Diseases

It’s no secret that finding financial aid for college can be a daunting task. And when it comes to rare diseases, the challenge can seem even more significant. That’s because many people don’t realize how common rare diseases actually are. In fact, according to the National Institutes of Health, one in ten Americans suffers from a rare disease.

That’s why it’s so important for families affected by rare diseases to know about all the financial aid options available to them. But first, let’s discuss rare diseases in a little more detail.

What Is a Rare Disease?

A rare disease is defined as any disease that affects fewer than 200,000 people in the United States. There are nearly 7,000 known rare diseases, and many of them are genetic. Some of the most common genetic rare diseases include cystic fibrosis, Huntington’s disease, and Duchenne muscular dystrophy.

Why Is Financial Aid So Important for Rare Diseases?

Financial aid is important for rare diseases because these illnesses often require expensive treatments and therapies. For example, the average cost of caring for a child with cystic fibrosis is over $300,000 per year. That’s why families affected by rare diseases often need help to pay for medical expenses.

What Kinds of Financial Aid Are Available?

There are many types of financial aid available to families affected by rare diseases. Some of the most common options include scholarships, grants, and loans.


Scholarships are an excellent option for families affected by rare diseases because they don’t need to be repaid. There are a number of scholarships available specifically for students with rare diseases, and many colleges also offer scholarships for students with disabilities.


Grants are another great option for families affected by rare diseases. Like scholarships, grants do not need to be repaid. Grants are often awarded based on financial need, so families affected by rare diseases may be eligible for a grant even if they don’t have a lot of money.


Loans are the most common form of financial aid, and they are also a great option for families affected by rare diseases. Loans need to be repaid, but they often offer lower interest rates than other forms of debt.

Clinical Trials

Clinical trials are another option for families affected by rare diseases. Clinical trials are research studies that test new treatments for diseases. Trials can be expensive, but many pharmaceutical companies offer financial assistance to patients who participate in their trials. Patient recruitment for rare disease trials is also often supported by foundations and nonprofit organizations.

How Can I Apply for Financial Aid?

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The best way to apply for financial aid is to visit the website of the organization or college you are interested in. Most organizations and colleges have a section on their website dedicated to financial aid.

You can also visit the website of the United States Department of Education. This website provides a wealth of information about financial aid, including a searchable database of scholarships and grants.

Finally, you can also contact the financial aid office of your college or university for more information. They will be able to help you find the right financial aid for you and your family.

Tips for Caring for a Child With a Rare Disease

1. Contact a Support Group

There are many support groups for families affected by rare diseases. These groups can provide emotional support and advice on dealing with your disease.

2. Connect With Other Families

One of the best things about support groups is that they connect families with similar experiences. This can be helpful in finding information and resources.

3. Get Involved in Advocacy

Families affected by rare diseases can play an important role in advocating for more research and funding for their disease.

4. Connect With Online Resources

There are a number of online resources available for families affected by rare diseases, including websites, forums, and social media groups.

5. Seek Help From a Financial Advisor

Dealing with a rare disease can be overwhelming, and it’s important to take care of yourself financially. A financial advisor can help you create a plan to manage your finances and cover medical expenses.

Financial aid is an important part of the lives of families affected by rare diseases. By knowing about the different types of financial aid available, these families can get the help they need to pay for treatments and therapies. So if you or someone you know is struggling with a rare disease, don’t hesitate to apply for financial aid. You may be surprised at how much help is available.

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