Press Release

Starting college is a major life transition and for students living with rare kidney disease (RKD), it comes with added layers of complexity. Whether you’re preparing to leave home for the first time or supporting a young adult who is, it can be tough to know where to begin. 

To help support young adults and families through this life stage, NephCure spoke with Sean Converse, a college senior and a young adult with RKD, who offered valuable insight into what it really means to prepare for the transition to college while managing rare kidney disease. 

1. Starting the Conversation at Home  
Before leaving for college, Sean emphasized the importance of having an open and honest conversation between teens and parents about health responsibilities.   

“Outline expectations around diet, medication management, and mental health care. Once these expectations are outlined and agreed upon by both the parent and teen, they need to work to build trust that the teen can fulfill those responsibilities,” said Sean.  

2. Choosing the Right Campus  
When considering where to attend college, Sean recommends factoring in healthcare access and available on-campus resources.  

Look into how close the campus is to nephrologists or other specialists. If the campus is far away from nephrology care, it will add stress to student and family. If you need help finding a specialist in your area, NephCure can help point you in the right direction. Please click the button below and fill out the form to receive assistance.  

Patient Navigation Services

Make sure that the university has a disability services office, sometimes called the Academic resource Center (ARC), or 504 Office, that will help you secure documented accommodations. 

Sean said, “When you go on the campus tour, ask about what resources they offer for someone with a rare disease. Then, work with the resource center and your doctor to have accommodation documents drafted before school starts. Make sure that everything is documented, being very detailed in what is allowed and not allowed and get a copy of the documents.” 

Examples of accommodations might include extra time on exams, excused absences for medical appointments, dietary modifications in dining halls, or access to a private room or bathroom. 

It is extremely important that students with rare kidney disease take the initiative to get their accommodations formalized through the university. This is because professors cannot require students to disclose private health information unless the student chooses to share it through the official accommodations process. 

FERPA (the Family Educational Rights and Privacy Act) protects the privacy of students’ education records. It does not prevent a professor from casually asking a student how they are doing. For example, a teacher may ask, “Are you feeling okay?” or “Is everything alright?”—that is not a FERPA violation. However, students are never obligated to share medical details, and professors are not allowed to demand or keep records of health information outside of the formal accommodation process. So, if the accommodations and details of the student’s medical struggles are not documented, a professor may never fully understand the student’s needs. 

“By having the conversations to confirm that you will have access to resources, you put yourself in the best position to succeed,” said Sean. 

Sean shared that students could receive accommodations regardless of school size. “You can get accommodations in a smaller school or a big school. I go to a small school, and I got the accommodations I need. On the other hand, I helped my friend Ella, who has a rare kidney disease, have a car on campus, when that normally is not allowed, and get a private room.” 

3. Dorm Life and Roommate Selection  
Sean stressed that every student’s preference and medical needs are different when it comes to dorm life. Some may prefer a private room; others may opt for traditional shared housing. What matters is that students feel comfortable and understand what their options are. 

Roommate selection can be approached however feels right. Students don’t have to disclose their diagnosis unless or until they feel ready. 

4. Preparing Accommodations During Senior Year  
To start college strong, Sean recommends using senior year of high school to proactively prepare. This includes: 

• Gathering documentation for accommodation requests. 

• Reaching out to the university’s disability services office early to understand the process.  

• Speaking with a medical team to determine whether living away from home is appropriate. “Ask if moving out is something they recommend? A simple question may lead to a broader conversation,” said Sean. 

5. Preparing Emotionally and Socially 
Finally, Sean reflected on the social side of the transition. Moving into a new peer group can be daunting, especially for young adults who have previously felt misunderstood or isolated due to their health. 

His advice is simple but meaningful: be open to meeting people and share your diagnosis only when and if you feel ready. Building friendships with people who are accepting and respectful can make a big difference during this transitional period. 

“Be yourself, don’t be afraid to put yourself out there. Be willing to go out and meet people. You don’t have to mention your disease at first if you don’t want to. And be friends with people that accept you,” said Sean. 

You’ve got this!  
Preparing for college as a student with a rare kidney disease involves more than just packing and registering for classes. It’s about developing independence, advocating for support, and setting yourself up for success both academically and medically. 

With insights from peers like Sean and the support of NephCure’s tools and community, students and their families don’t have to navigate this transition alone.  

For more guidance and to connect with others in the rare kidney disease community, visit the Get Involved tab on our website.