A Rare Opportunity for College Students

January 22, 2019

Here’s a sobering thought: student debt reached a record $1.5 trillion in 2018 and 42 percent of people who attended college are taking on debt to do so, according to the Federal Reserve Bank.

The last major round of deadlines for college admissions for the Fall of 2019 are approaching, but for anyone planning on attending college in 2019, there’s still time to think about how to pay for it.

For people with a rare disease, one way to help cover the costs for college is by taking advantage of scholarships that are available. Though you may qualify for any of number of scholarships based on academic merit or other qualifications—there are scholarships for vegans, tall people, and duck calling—there are a number of scholarships available for people with a rare condition.

These scholarships fall into three categories. The first includes scholarships for students with any rare disease, such as Shire’s ACES scholarship or the Healthline & NORD Stronger Scholarship

The second group of scholarships is awarded to students with a specific rare disease. This includes diseases such as cystic fibrosis, hemophilia, PKU, narcolepsy, and sickle cell disease.

The last group of scholarships are not for someone with a rare disease per se, but for people with any kind of disability, such as the American Association on Health and Disability’s AAHD Frederick J. Krause Scholarship on Health and Disability, which awards grants of up to $1,000.

Two good general resources online worth searching are NeedyMeds and NeedyMeds is a nonprofit education and advocacy organization seeking affordable healthcare. The organization maintains a listing of scholarships that can be searched by condition and other ways. offers a broader array of listings, but includes a section of scholarships based on physical disabilities, which includes certain rare diseases.

Be aware that deadlines vary. Some of these scholarships have deadlines as early as February 15, while others may be several months away.

For four years I was the beneficiary of a New York Regent Scholarship. A friend had called my attention to it as I was leaving school one day. All I had to do to apply was fill out a form with little more than my name and address. The awards were made on the basis of SAT scores. If I broke a pre-ordained score and went to school in New York state, I would qualify. But it turned out the form was due into the school office that day. I managed to squeak in under the deadline (and the SAT cut-off for that matter). The lesson, though, is to pay attention to deadlines.

If you are planning to pursue one of these scholarships, take the time to do a little legwork now to understand what it takes to apply and when applications must be completed.

January 22, 2019

Editor’s note:

We are adding new scholarships to this list as we learn of them.

BioMarin RARE Scholars
The RARE Scholars program will distribute up to $20,000 each year, awarding $5,000 for undergraduate four-year or graduate studies or $2,500 for two-year or vocational-technical studies. Applicants must be high school seniors, graduates or current postsecondary or graduate level students diagnosed with mucopolysaccharidoses (MPS) phenylketonuria (PKU) or Batten disease and are not required to be previously or currently undergoing treatment with a BioMarin product.

Chart Your Own Course
The 2019 Chart Your Own Course scholarship program is open offers 15 scholarships for people with lysosomal storage disorders.

The PDSA College Scholarship
The PDSA College Scholarship Program provides financial assistance to senior high school students, college students. or adults interested in continuing education who are suffering from ITP or a similar inherited or non-inherited platelet disorder.

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