Gen-Z and the Hope for Rare Disease

Last weekend was college graduation for many in the Class of 2023 and what a weekend it was. It was said over and over that this was class that persevered through the pandemic from their freshman year forward, through social movements and protests that we had not seen in decades and so much that we, Gen-Xers never could have fathomed. When we met our son's friends we met people who will make a positive impact on the world. Just in his friend group there are those in the education field, medical field, immunology, business and ecology. They are passionate, organized (a spreadsheet for the parent cookout graduation-eve), smart and have strong moral compasses. We should feel encouraged that the future is in their hands.

I sat in the stands watching almost 9,000 students graduate Saturday afternoon - these were the undergraduates, graduate degree and law students. They have the world in front of them and can go in so many directions. The evening prior at another venue was a smaller ceremony for PhD and Doctoral graduates. I can only imagine the brilliance in that room - the dedication to their studies and to changing the world. And, oh, what I would have given for an opportunity to give my elevator speech for why rare disease is important in research and in practice to both Friday's and Saturday's audiences. I, of course, was not given that opportunity so instead you get to hear it here and if you know someone graduating in any field that can impact the rare disease community - medicine, law, sciences, education, with aspirations for research, or even politics, please share this.....

Rare disease, one would think is rare, but please believe me - it is not. Rare disease effects 1 in 10 in the United States, and potentially even more globally. If we took the rare disease population of the world it would make up the 3rd largest country! While each rare disease may impact a small number of people itself, many diseases have similarities and your work and help in rare diseases can have a larger impact than you can even imagine. With scientific advances in genetics and artificial intelligence there are so many new possibilities for more treatments and even cures of rare diseases - currently less than 10% even have FDA approved treatments. We are on the cusp of so much and we know your minds and ambitions can take us there. Those of you going into mental health fields, please know how needed you are, for our rare disease patients and their caregivers - the path from the diagnostic journey on, can be difficult, scary and often lonely and many could benefit from mental health services which right now are seriously lacking for everyone. We need people to help lead nonprofits to help us advocate, people going into politics who understand our plight. Anyone graduating with potentially any degree and at any level can make a difference. Going into education - make sure that people are aware that these illnesses exist, dietary science - help spread and be aware of the effects of food on those with rare diseases. If you are going into communications - help us to effectively get our message out clearly. And if you are one of the many going into a medical field, please remember that when you hear hooves, it may very well be a zebra.