Bucking Up Students with Rare Disease

Editor’s note: This story was originally published  February 12, 2020. It was updated February 28 to include a listing of additional scholarships.

In the movie Max Dugan Returns, Max (Jason Robards) encourages his grandson Michael (Matthew Broderick) to study philosophy in college.

“Can you make money from philosophy? Michael asks.

“Yeah,” says Max, “If you have the right one.”

It’s a little like that when it comes to paying for college. A growing number of scholarships are available for people with rare diseases, and many of those depend on a student having the right one.

Given the incoming class of 2024 is done sweating the SATs, sent off their applications, and now are waiting for acceptance letters to arrive, it’s not too early to figure out how to pay for what’s ahead. Last year around this time we gathered a list of scholarships and thought it would be a good time to revisit that, our small effort in keeping a lid on the $1.5 trillion of student debt that exists today.

The average cost of a private nonprofit four-year on campus school (all expenses) reached $53,980 a year in 2019-2020, according to the College Board’s Annual Survey of Colleges. At the other end of the spectrum, a public two-year in-district commuter school cost an average of $18,420.

The scholarships listed below are not going to meet all of a student’s expenses, but as people will need to likely tap a number of different sources, for people with rare conditions, this may help them to think about opportunities they had not considered.

This is a short list but is intended to help start the search for scholarships. As in the past, we invite people to send a note with links to other rare disease scholarships that may be of interest and we will update this list. You can drop an email to [email protected].

Though there are a broad range of scholarships relating to health conditions. Many consider academic achievement and other measures in addition to applicants’ health issues.

NeedyMeds, a nonprofit that help connect people to programs that help them afford medications and other healthcare costs, provides a listing of scholarships by condition. It has an extensive list and is not limited to rare disease, but includes many rare conditions. Scholarships.com, another worthwhile resource, provides a list of scholarships based on physical disabilities and this includes a number of rare conditions as well, including MPS, hemophilia, glycogen storage disease, and others.

Several scholarships are sponsored by drug companies and these often support the patient populations they serve. For instance, BioMarin’s Rare Scholars program provides $5,000 a year for undergraduate or graduate studies or $2,500 for two-year or vocational-technical studies for applicants diagnosed with MPS, phenylketonuria, or Batten disease. It awards up to a total of $20,000 a year.

The AbbVie CF Scholarship program provide up to $3,000 each for 40 scholars. One undergraduate and one graduate student are selected to receive a Thriving Student Scholarship, which provides an additional $22,000 each.

Another source of scholarships for students with rare conditions can be patient organizations. For instance, the Platelet Disorder Support Association offers the PDSA College Scholarship Program. It awards several scholarships to people with ITP with awards ranging from $1,500 to $250. Candice’s Sickle Cell Fund offers scholarships. Other patient organization scholarships can be broad and extend beyond patients to their parents and siblings. That’s the case of the Hanna Ostrea Memorial College Scholarships, which are for $1,000.

Even if rare disease organizations don’t offer scholarships, they can be good resources for finding out about scholarships that are available for people with a specific condition. For example, the National Hemophilia Foundation offers a list of scholarships for people with bleeding disorders.

In looking at available scholarships, we reviewed links we included last year and found a number have either been discontinued or have not posted scholarship information for 2020.

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. They all have deadlines, but these deadlines vary widely. Don’t blow what might be a helpful source of money by moving too slow. Already we noticed at least one scholarship listed last year has stopped accepting applications for 2020-2021.

Below is a list of additional scholarships readers have sent to us since the original publication of this article:

Guthrie-Koch Scholarship 
This scholarships is open to any college-age person with PKU who is on diet treatment.

Horizon Therapeutcis and Everylife Foundation
Horizon Therapeutics and the Everylife Foundation for Rare Disease announced a $1 million, 5-year commitment to establish the #RAREis scholarship