NPKUA Conference 2026, Chicago

Disclaimer: I am not a doctor, dietitian, nutritionist, or any other healthcare professional, let alone YOUR provider. All information provided below is a summary of my experience at the NPKUA conference. Any treatments mentioned are to help inform others of possible treatment options, not to prescribe. Talk to your clinic and your providers about any changes you want to make to your PKU treatment or care.

So this was officially my first NPKUA conference. I initially thought this was my second conference, but after talking to some folks that have been to every conference, I learned that the event I was thinking about was not a NPKUA conference but some other PKU event. I had previously been to another larger event hosted at a culinary school in Denver, CO in 2011. I thought that was a NPKUA conference, but I guess it was just another large PKU event. Either way, both my experience then and my experience now at the Chicago event were amazing.

For not having been to a PKU event in a long time, let alone a larger event, it was at times a bit overwhelming. But, one thing I will say from this experience and from all my past PKU event experiences is that the PKU community has always been open and welcoming regardless of whether I have attended with others or by myself.

On that note, I will say I am an introvert and it can be hard for me to open up to people, especially in new places and large events like this. If I had the opportunity to speak with you, I truly appreciate you taking the time to speak with me. I value all the conversations that I had, PKU related and not. If I did not get the opportunity to speak with you, please know that I was truly out of my comfort zone being by myself and among so many people at this event (over 600!). It took a lot of effort to approach people and put aside my negative self-talk to meet and connect with all of you! But I’m truly grateful that I was able to overcome those things and meet all of the wonderful people I had the chance to interact with.

A group of amazing ladies I met at the conference!

With all of that said, there were some really important conversations being held at the conference, one of which was regarding mental health -- an area very important to me. The other areas that I know were hot topic discussions at the conference were aging with PKU, maternal PKU, and caregiving with/for those with PKU. These were all topics in the breakout sessions, in addition to insurance, genetic testing, available and upcoming treatments, PKU peer connections, transitioning from pediatric to adult care, traveling with PKU, and just general PKU care. These topics cover a wide variety of PKU experiences that I think everyone can find something they relate to. But, these conversations need to keep happening so that we can gain a fuller understanding of how PKU affects us across all areas of our life. One thing I took from this conference is that there is still SO much research that needs to be done, not only for knowledge, but to put things in place that will allow all of us to live the best quality lives that we can.

One of the lunch buffets from the conference

For those of you who were unable to attend the event for whatever reason, I do want to share some valuable resources that they discussed. One of which is the PKU Patient registry. NPKUA uses this registry to collect information about your PKU management and care, allows you to participate in research, and informs you of other research opportunities that are so much needed to help further educate and provide treatments and access to things to help improve our PKU care.

In terms of treatments, the current FDA approved treatments in the USA are Sapropterin (Kuvan), Palynziq, and Sephience. Sephience was just FDA approved last fall, and Palynziq just got approved in use for teens age 12 and older. I’ll do another post to discuss more about treatments later, but go check out their websites for more information. There are also other treatments and PKU management tools in clinical trials that will hopefully get approved soon for use in our community. These include an at home phe monitoring device, a renal transport inhibitor, and gene therapy.

There were so many good sessions and so much good information from this conference that there is no possible way for me to talk about everything that was shared and experienced. But I do want to shout out Chef Neil for his cooking session! As you guys know, I mostly post PKU recipes so any time I can get recipe ideas or cooking tips and tricks I always greatly appreciate it, especially from someone who knows a little bit about low-protein cooking. I tried to find Chef Neil after his session to introduce myself, but unfortunately I was unable to locate him before the end of the conference.

If you have read all the way to this point, thank you! I know this was a long article but I wanted to share my experience at the conference for those of you who may be curious about going. And maybe for those of you who want to go but are nervous because you would likely come alone. Let me say from my experience, even coming alone I still felt very welcome and even though I got in my head a little bit the first night, my advice is to push through and meet and talk to as many people as you can. It’s worth it, you make good connections and gain a lot of relevant PKU information. My personal opinion is that every person with PKU should go at least once in their life!

TL;DR: The NPKUA conference is amazing, make it a priority to go if you have not been able to. AND the next conference will be in Orlando, FL (Disney!)