https://www.patientled.org/blog-posts daily 0.75 2021-01-20 https://www.patientled.org/blog-posts/mashed-potatoes-with-mushrooms-and-brussels-sprout-zcb2z monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588647101271-2Z1BJ6CARR5YPF46IMMW/image-asset.jpeg Blog posts - Mashed potatoes with mushrooms and brussels sprouts https://www.patientled.org/blog-posts/beetsalad-d8t3n monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588646511943-7ND7VMAMYX4VNKBWFKT8/image-asset.jpeg Blog posts - Winter beet salad https://www.patientled.org/blog-posts/goldenmilk-cc5xz monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588644326233-XHNWNULHT6162VSVNMM6/image-asset.jpeg Blog posts - Golden milk https://www.patientled.org/blog-posts/carrottahini-y526g monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588643295299-E37QMPWT8SI0CS3S0W0R/image-asset.jpeg Blog posts - Roasted carrots with walnuts and tahini https://www.patientled.org/blog-posts/watermelonsalad-h4lmp monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588642230099-V8VX84X0I1MY9Z5QUAUY/image-asset.jpeg Blog posts - Watermelon and feta salad https://www.patientled.org/blog-posts/face-mask-d3ry6-28y2j monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588641774965-6SR6G7N69MVRCYYTY6D9/Stocksy_comp_2263541.jpg Blog posts - Spinach and persimmon salad https://www.patientled.org/blog-posts/face-mask-6zkdy monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588193268657-ZR40QF5GTKGIINHMBIGG/image-asset.jpeg Blog posts - Energizing face mask https://www.patientled.org/blog-posts/ginger-soda-k6hb7-w85w4-c7yb2 monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588112672204-5R5EUMXRE0JNC5340XUI/Stocksy_comp_1276830.jpg Blog posts - Salmon power bowl https://www.patientled.org/blog-posts/ginger-soda-k6hb7-jnn8p monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588110240245-9M0K0FBTMOBTTRR8ZSPN/Stocksy_comp_2610683.jpg Blog posts - Fruit and yogurt bowl https://www.patientled.org/blog-posts/pea-amp-goat-cheese-crostini-camsh monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588107306104-9A7C74TZ8VV2KO71MBBU/Stocksy_comp_1615401.jpg Blog posts - Pea and goat cheese crostini https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588107039010-XOV7KLGV11SD788ED0MJ/Stocksy_comp_1615401.jpg Blog posts - Pea and goat cheese crostini https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588107066845-1W1OJIA4APRMC3QSFNZ0/Stocksy_comp_2054574.jpg Blog posts - Pea and goat cheese crostini https://www.patientled.org/blog-posts/5fc13kx3gk3xyhnyx4gajo22ky42m0-r4hfw monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588105503045-KGKEQNFRUH50V5B76555/Stocksy_comp_1953842.jpg Blog posts - Avocado toast https://www.patientled.org/blog-posts/ginger-soda-hez74 monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588106309579-O1Z1WILO0N4M30RWB9Q8/Ginger+Soda Blog posts - Ginger soda https://www.patientled.org/blog-posts/category/Recipe monthly 0.5 https://www.patientled.org/blog-posts/category/Wellness monthly 0.5 https://www.patientled.org/blog-posts/tag/Beauty monthly 0.5 https://www.patientled.org/blog-posts/tag/Breakfast monthly 0.5 https://www.patientled.org/blog-posts/tag/Autumn monthly 0.5 https://www.patientled.org/blog-posts/tag/Winter monthly 0.5 https://www.patientled.org/blog-posts/tag/Dinner monthly 0.5 https://www.patientled.org/blog-posts/tag/Summer monthly 0.5 https://www.patientled.org/blog-posts/tag/Skin monthly 0.5 https://www.patientled.org/blog-posts/tag/Snack monthly 0.5 https://www.patientled.org/blog-posts/tag/Drink monthly 0.5 https://www.patientled.org/blog-posts/tag/Spring monthly 0.5 https://www.patientled.org/blog-posts-1 daily 0.75 2021-01-20 https://www.patientled.org/blog-posts-1/mashed-potatoes-with-mushrooms-and-brussels-sprout-r6scy monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588647101271-2Z1BJ6CARR5YPF46IMMW/image-asset.jpeg Blog posts - Mashed potatoes with mushrooms and brussels sprouts https://www.patientled.org/blog-posts-1/beetsalad-pk67w monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588646511943-7ND7VMAMYX4VNKBWFKT8/image-asset.jpeg Blog posts - Winter beet salad https://www.patientled.org/blog-posts-1/goldenmilk-dapps monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588644326233-XHNWNULHT6162VSVNMM6/image-asset.jpeg Blog posts - Golden milk https://www.patientled.org/blog-posts-1/carrottahini-84y9a monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588643295299-E37QMPWT8SI0CS3S0W0R/image-asset.jpeg Blog posts - Roasted carrots with walnuts and tahini https://www.patientled.org/blog-posts-1/watermelonsalad-jgtxt monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588642230099-V8VX84X0I1MY9Z5QUAUY/image-asset.jpeg Blog posts - Watermelon and feta salad https://www.patientled.org/blog-posts-1/face-mask-d3ry6-5r3e4 monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588641774965-6SR6G7N69MVRCYYTY6D9/Stocksy_comp_2263541.jpg Blog posts - Spinach and persimmon salad https://www.patientled.org/blog-posts-1/face-mask-xc226 monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588193268657-ZR40QF5GTKGIINHMBIGG/image-asset.jpeg Blog posts - Energizing face mask https://www.patientled.org/blog-posts-1/ginger-soda-k6hb7-w85w4-csyyf monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588112672204-5R5EUMXRE0JNC5340XUI/Stocksy_comp_1276830.jpg Blog posts - Salmon power bowl https://www.patientled.org/blog-posts-1/ginger-soda-k6hb7-l9ysh monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588110240245-9M0K0FBTMOBTTRR8ZSPN/Stocksy_comp_2610683.jpg Blog posts - Fruit and yogurt bowl https://www.patientled.org/blog-posts-1/pea-amp-goat-cheese-crostini-pzk73 monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588107306104-9A7C74TZ8VV2KO71MBBU/Stocksy_comp_1615401.jpg Blog posts - Pea and goat cheese crostini https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588107066845-1W1OJIA4APRMC3QSFNZ0/Stocksy_comp_2054574.jpg Blog posts - Pea and goat cheese crostini https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588107039010-XOV7KLGV11SD788ED0MJ/Stocksy_comp_1615401.jpg Blog posts - Pea and goat cheese crostini https://www.patientled.org/blog-posts-1/5fc13kx3gk3xyhnyx4gajo22ky42m0-f37pp monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588105503045-KGKEQNFRUH50V5B76555/Stocksy_comp_1953842.jpg Blog posts - Avocado toast https://www.patientled.org/blog-posts-1/ginger-soda-myrh3 monthly 0.5 2020-10-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1588106309579-O1Z1WILO0N4M30RWB9Q8/Ginger+Soda Blog posts - Ginger soda https://www.patientled.org/blog-posts-1/category/Recipe monthly 0.5 https://www.patientled.org/blog-posts-1/category/Wellness monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Beauty monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Breakfast monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Autumn monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Winter monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Dinner monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Summer monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Skin monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Snack monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Drink monthly 0.5 https://www.patientled.org/blog-posts-1/tag/Spring monthly 0.5 https://www.patientled.org/stories daily 0.75 2025-06-30 https://www.patientled.org/stories/restoring-vision-loss-is-it-possible monthly 0.5 2025-06-30 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/84c8332e-8bab-4206-8d56-f490fdd7d2d2/photoreceptors.jpg Stories - Restoring Vision Loss - Is It Possible? - Make it stand out https://www.datacolor.com/business-solutions/blog/the-role-of-rods-and-cones-in-color-perception/ https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/80b78cea-f27d-4f1f-8619-843fcbd5322d/3-s2.0-B978032395702100021X-f00021-01-9780323957021.jpg Stories - Restoring Vision Loss - Is It Possible? Visual pathway once the information leaves the retina and goes through the occipital lobe, V1. https://www.patientled.org/stories/touch-my-arm-to-engage-with-me monthly 0.5 2025-06-30 https://www.patientled.org/stories/part-2-developing-retinal-organoids monthly 0.5 2025-06-30 https://www.patientled.org/stories/listening-to-loss monthly 0.5 2025-06-30 https://www.patientled.org/stories/the-healing-power-of-a-conversation monthly 0.5 2024-09-06 https://www.patientled.org/stories/glioblastoma-patient-advocate monthly 0.5 2023-12-15 https://www.patientled.org/stories/lead-us-from-darkness-to-light-navigating-the-hospital monthly 0.5 2023-09-18 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/24c230a6-ad40-4607-bc54-74c4d0dd399a/IMG_5350.jpg Stories - Lead us from darkness to light: Navigating the hospital - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientled.org/stories/from-one-to-many monthly 0.5 2023-01-21 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/638eef6d-c67c-434b-a176-9f1a22f21e32/from+one+to+many.PNG Stories - From One to Many - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientled.org/stories/poetry-submission-the-frustrations monthly 0.5 2023-01-10 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/221d1e0f-9798-4d59-9d19-1dc4253760b9/corrected+vision.PNG Stories - Poetry submission: A stranger’s perspective on my vision loss experience - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientled.org/stories/studying-my-disease-using-my-stem-cells monthly 0.5 2023-01-11 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/10f4634b-115d-4c44-814c-ef66b272fb82/11.20.22_Day26_Transduction_20x_w02_img03.jpeg Stories - Phase 1: my stem cells - Make it stand out Day 34 and colonies were no more 16 cells. https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/f9daae6a-3e6f-4f72-a429-3acdbac30e48/p2-p3.PNG Stories - Phase 1: my stem cells - Make it stand out Stem cells packed into a single colony compared to very spaced out differentiated (non-stem cells). Top left: 10x magnification of colonies. Bottom left: 4x magnification to see entire colony. Bottom right: 20x magnification to see packed cells. Top right: non-stem cells not packed densely into a colony. https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/08e4f1ef-a9d0-4bee-9fa2-659c23a81bea/IMG_2059.jpg Stories - Phase 1: my stem cells - Make it stand out Back in June, I pose with my my blood draw and getting ready to get it processed in the lab. https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/e1cd4828-8f07-4995-bfed-83679bf24a25/eys.PNG Stories - Phase 1: my stem cells - Make it stand out EYS shown in green is expressed at the base of the outer segment of both rod and cone photoreceptors. You can see the higher expression of EYS in the outer segment of blue cone receptors, which is co-stained with blue opsin (Yu et al., 2016). https://www.patientled.org/stories/chapter-1-diagnosis monthly 0.5 2022-06-01 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/6e12ea26-e690-4d96-979a-1fc835338e7b/patientjourney.jpg Stories - Chapter 1. Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientled.org/stories/nih-grant-approved-to-develop-my-retinal-organoids monthly 0.5 2022-05-03 https://www.patientled.org/stories/reading-i monthly 0.5 2022-05-01 https://www.patientled.org/stories/natural-history-clinical-trial-for-eys monthly 0.5 2022-03-23 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/87e9a695-aca8-429e-9a3e-75c1734c801d/wt+vs+van.png Stories - natural history clinical trial for eys - Make it stand out This is a visual field captured using Octopus and it’s measuring visual sensitivity of a patient’s visual field. Green indicates positive response to stimuli and dark reddish color indicates negative response to stimuli. https://www.patientled.org/stories/patient-perspective-for-rare-disease-day-panel monthly 0.5 2022-03-23 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/760e958b-07cb-49c6-af2c-4816df2372a5/syneo+health+rare+disease+day.PNG Stories - patient perspective for Rare disease day panel - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.patientled.org/stories/Blog Post Title One-yyrsc monthly 0.5 2021-02-23 https://www.patientled.org/stories/category/caregiver monthly 0.5 https://www.patientled.org/stories/category/organoids monthly 0.5 https://www.patientled.org/stories/category/mental+health monthly 0.5 https://www.patientled.org/stories/category/vision+loss monthly 0.5 https://www.patientled.org/stories/category/bionics monthly 0.5 https://www.patientled.org/home daily 1.0 2024-09-06 https://www.patientled.org/home-1 daily 0.75 2021-01-19 https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1597176196847-DWX802R675NDDR8YJFWY/image-asset.jpeg Home https://images.squarespace-cdn.com/content/v1/5e9e44e143969e061c2ed8fa/1597176222878-VNO4IURU4A6FKY574C29/image-asset.jpeg Home https://www.patientled.org/work-with-me daily 0.75 2021-01-19 https://www.patientled.org/contact daily 0.75 2022-03-17 https://www.patientled.org/about daily 0.75 2025-08-29 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/1611091726136-JUICGP0UJBUOUEE71B34/07_8115.jpg About - Hi, I’m Van Duesterberg, a scientist and patient with RP. I coined the term patient-scientist when it became my mission to discover a cure for my blindness—and to help others navigate their own health journeys. My background is in biophysics, where I specialized in building high-resolution automated microscopes to detect diseases early and accelerate discovery. For years, my career focused on advancing imaging technologies and creating early detection medical tools. But in 2010, everything shifted when I was diagnosed with retinitis pigmentosa, a rare genetic disease that leads to progressive vision loss. I was told there was no cure, no treatment, and that I should begin mobility training with a cane. I left my clinic devastated, with no resources beyond “accepting my fate.” Instead of succumbing to the status quo, I began collecting and organizing my medical records, genetic data, and lab results. I dove into the scientific literature and taught myself everything I could about my condition. Eventually, I secured grant funding to model my own disease using patient-derived stem cells and grew retinal organoids to study it in the lab. By combining my expertise in microscopy and biophysics with my lived experience as a patient, I was able to explore new pathways toward treatments where none had been offered. This journey has also shown me how overwhelming and isolating rare disease can feel, especially for patients and families without scientific training. I’ve met many parents fighting desperately for treatments for their children, facing the same lack of guidance I once did. That’s why I now share not just my scientific knowledge, but also the lessons I’ve learned as a patient navigating uncertainty—helping others track their health data, understand the science, and connect with rare disease communities working toward cures. I believe innovation begins at the intersection of science and lived experience. My mission is to use both—my expertise as a scientist and my journey as a patient—to make the path toward treatments clearer, more hopeful, and more collaborative for others seeking answers. I began my journey by collecting and keeping track of my own electronic health records, genetic data, and lab tests and being on top of the scientific literature of my rare retinal disease. I have a deep passion for helping others navigate their health by sharing resources and connecting to other rare disease communities in finding their own cure. https://www.patientled.org/patient-advocacy daily 0.75 2023-12-13 https://www.patientled.org/inspiring-books daily 0.75 2024-12-03 https://www.patientled.org/retinal-disease-community-and-resources daily 0.75 2023-12-15 https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/1647906979731-OBC417RIBLNNJVRPCJTO/11.2021_PROEYS_OCT_left.png Retinal Disease Community and Resources https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/1647907594310-DF4APPGLT5PUMEBOJX0I/IMG_9222.jpg Retinal Disease Community and Resources https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/1647907878541-BYD19QRR1Z0KU9B20043/IMG_0867.jpg Retinal Disease Community and Resources https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/1647912569331-PYAH447JCKPHTFITJM9I/IMG_9221.jpg Retinal Disease Community and Resources https://images.squarespace-cdn.com/content/v1/600741051ab2dc6f4c355689/1653109755802-RHGJ4BFY37QB7PZOPZ2D/sametheblindlife.PNG Retinal Disease Community and Resources https://www.patientled.org/course-welcome daily 0.75 2021-01-19 https://www.patientled.org/course-welcome/week4-4hb8x monthly 0.5 2020-11-11 https://www.patientled.org/course-welcome/week1-teb3j monthly 0.5 2020-11-11 https://www.patientled.org/course-welcome/week2-6kyj6 monthly 0.5 2020-11-11 https://www.patientled.org/course-welcome/week3-7kdz2 monthly 0.5 2020-11-11