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Funding Clinics to Advance Knowledge of Myhre Syndrome - Make it stand out Alec has been visiting the clinic regularly since his diagnosis. https://www.myhresyndrome.org/news/research-team monthly 0.5 2022-11-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/7a9bf839-e5a2-4459-81f0-ad3b49ea924f/Research+team+mgh.jpg News - Research Team Retreat - Representing Myhre - Make it stand out From left Joseph Lawton, BS, CRA, Eleanor R. 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Rare Disorder & Syndrome Clinics – “Everything (well, almost) you wanted to know, and have been asking” https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1631073037607-42UBUGOSEBA7EVI9TOI3/doctor+hospital.jpg News - Rare Disorder & Syndrome Clinics – “Everything (well, almost) you wanted to know, and have been asking” - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/news/2021/8/12/everything-about-genetics-is-so-fascinating-and-the-passion-for-the-myhre-community-is-contagious monthly 0.5 2022-02-26 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1628803929783-2K61162BTGXGYPF1M3Y8/Eleanor.jpg News - “Everything about genetics is so fascinating and the passion for the Myhre community is contagious” - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/news/2021/7/18/the-first-msf-virtual-conference-what-a-weekend monthly 0.5 2021-07-18 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1626640095250-T2UWEQFH2ZFO5TYUUZSE/Myhre_VC+2021_Banner+Conf+Host.jpg News - 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Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1625462940230-TE9ARLUL83J5R0UAYZRB/63911402-9504-434D-BDAC-E18B4DA41DC3_1_201_a.jpeg News - Anna Young chosen for Special Olympics 2022 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1625462993237-V8RJZTCTV9IY2RX8L97G/01A3EFC3-BDCB-4AD7-A54A-C62E8A3D093E.jpeg News - Anna Young chosen for Special Olympics 2022 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/news/2021/6/15/the-million-reasons-run-elliots-story monthly 0.5 2021-06-16 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623818906682-HJ0L8IAO1EK6NEK2XZP6/Elliots-story-4.jpg News - The Million Reasons Run: Elliot’s story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/news/2021/4/20/magdalenas-story monthly 0.5 2021-04-20 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1618936692557-39D4J6KNYZT8J4L3OFD9/1618081851730.jpg News - Magdalena's Story https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1618936981969-REPH4GG34CR6X28VE6QL/1598008541771.jpg News - Magdalena's Story https://www.myhresyndrome.org/news/2021/3/10/sophie-amp-rafaels-story monthly 0.5 2021-03-10 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1615397796149-LBGX54LUD5RP2PATKJ8B/Rafael+Pottier+2.jpg News - Sophie & Rafael's Story https://www.myhresyndrome.org/news/2021/2/28/bnxjcca5iisfzrb5tdf2a5yhd7ywq8 monthly 0.5 2021-02-28 https://www.myhresyndrome.org/news/ourjourneywithmyhre monthly 0.5 2021-02-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1612905716213-5AELRM5AV3HSIAX2X8RR/April%2Bpost.jpg News - Our journey with Myhre Syndrome https://www.myhresyndrome.org/news/2020/11/1/pattis-story monthly 0.5 2021-10-27 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1614491498759-9WF3CPLJ4EVBWT0HY4NI/PXL_20210213_002056595.MP%2B%25281%2529.jpg News - Patti's Story https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1604249378046-S9E2P2LLR14JSKJAE2UD/Patti+and+Duke+cropped.jpg News - Patti's Story Pattie and Duke https://www.myhresyndrome.org/news/2020/7/11/myhre-in-the-midst-of-covid-19 monthly 0.5 2021-02-18 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1594475921214-2VY5NDHJL4PAJ34YI2Y3/dog+walk.jpg News - Myhre in the Midst of COVID-19 Edith and Tater enjoy the outside. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1594477206107-S0UJIVSAJXBZ3QJB8QSX/pic+of+cabinets+cleaning.jpg News - Myhre in the Midst of COVID-19 Helping out at home. Time to get organized, mom! https://www.myhresyndrome.org/news/2020/2/10/a-time-of-transition monthly 0.5 2021-02-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1581348338382-JODDZE6OL0EGKSJRSDYG/edith.png News - A Time of Transition Edith https://www.myhresyndrome.org/news/2019/11/26/this-is-me-by-katie-white monthly 0.5 2019-11-26 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1574772125523-BDF7P1HK47PAML0CB5FD/IMG_4501%5B6740%5D.jpg News - This is Me. Katie with her family. https://www.myhresyndrome.org/news/2019/11/11/marathoning-for-myhre-syndrome-foundation-meet-alex-and-lee monthly 0.5 2021-02-28 https://www.myhresyndrome.org/news/2019/9/16/from-the-laboratory-to-the-library-rare-disease-research monthly 0.5 2021-02-28 https://www.myhresyndrome.org/news/2019/6/28/i-will-be-strong monthly 0.5 2021-02-28 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1565541139231-FC5Y7VC284MA28AFJTZ7/65287062_328818991371632_8404833729314291712_n.jpg News - I Will Be Strong Elliot 15yrs (Montreal, Canada) https://www.myhresyndrome.org/news/tag/rare+disease monthly 0.5 https://www.myhresyndrome.org/news/tag/Fundraiser monthly 0.5 https://www.myhresyndrome.org/news/tag/myhre+syndrome monthly 0.5 https://www.myhresyndrome.org/news/tag/research monthly 0.5 https://www.myhresyndrome.org/news/tag/transition monthly 0.5 https://www.myhresyndrome.org/events daily 0.75 2026-06-19 https://www.myhresyndrome.org/events/2026/9/26/move-for-myhre-2026-virtual-community-conference-saturday-26-september-2026 monthly 0.5 2026-06-29 https://www.myhresyndrome.org/events/2024/5/26/myhre-research-webinars-ggp8t-aawn9 monthly 0.5 2026-04-15 https://www.myhresyndrome.org/events/2024/5/26/myhre-research-webinars-ggp8t-prarn monthly 0.5 2026-02-20 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour2-nkzpa-j3rb5 monthly 0.5 2026-07-08 https://www.myhresyndrome.org/events/2025/10/16/myhre-smad4-forum-neo-cysteine-molecular-glues-for-targeting-mutated-smad4-protein-l47ny monthly 0.5 2025-09-02 https://www.myhresyndrome.org/events/2025/10/16/myhre-smad4-forum-neo-cysteine-molecular-glues-for-targeting-mutated-smad4-protein monthly 0.5 2025-09-02 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour2-nkzpa monthly 0.5 2025-05-15 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour-asn42 monthly 0.5 2025-05-15 https://www.myhresyndrome.org/events/2024/5/26/myhre-research-webinars monthly 0.5 2026-01-02 https://www.myhresyndrome.org/events/2024/7/26/myhre-family-conference-2024 monthly 0.5 2024-05-16 https://www.myhresyndrome.org/events/2023/10/14/msf-international-virtual-conference monthly 0.5 2023-10-04 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour2 monthly 0.5 2024-12-30 https://www.myhresyndrome.org/events/2023/1/20/coffee-hour monthly 0.5 2024-12-22 https://www.myhresyndrome.org/events/2022/3/22/summer-seminars monthly 0.5 2022-08-05 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/4d4b37cd-fac7-4b69-9b1c-ca92e2c18c00/Supporters+Badge.png Events - Summer Seminars 2022 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/155c1db9-45cc-4433-a1af-91bc58686911/Facebook+Summer+Seminar+Post.png Events - Summer Seminars 2022 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/events/2021/7/31/move-for-myhre monthly 0.5 2021-08-11 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1627268564054-2K2U1C5HTKVNKTHTARYF/Move+for+Myhre_2021_banner+2.png Events - Move for Myhre - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/events/2021/2/17/dszn3vb6eg4et8kqery5jdd6ffyb9o monthly 0.5 2021-07-31 https://www.myhresyndrome.org/pab-research-summary daily 0.75 2021-06-14 https://www.myhresyndrome.org/pab-research-summary/2021/6/14/research-summary-constipation monthly 0.5 2021-06-14 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1623688847414-NSTJLLALWHWI5KDM10O7/Dr.+Sofia+Douzgou+Houge.jpg PAB Research Summary - Research Summary: Constipation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/pab-research-summary/2021/5/11/what-was-the-first-report-about-myhre-syndrome monthly 0.5 2021-06-02 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1620754966988-QHWXFU5LMSHB5LCBFWUI/Dr+Matt.jpg PAB Research Summary - What was the first report about Myhre Syndrome? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1620754819884-K62K2WF3FE7E98YEXIB9/Dr+Lin.jpg PAB Research Summary - What was the first report about Myhre Syndrome? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/pab-research-summary/2021/5/11/the-people-behind-the-research-losartan monthly 0.5 2021-05-11 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1620753944795-DPF4XTKXFBPPN1PR0D8J/Cappuccio.jpg PAB Research Summary - The people behind the research: Losartan - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.myhresyndrome.org/developmental-issues daily 0.75 2022-09-23 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887309188-TNBKCVG5L6DKUEYK6NAZ/image-asset.png Developmental & Behavioral Issues in Myhre Syndrome - Brain Health Amy Morgan, Ph.D, ABPP, discusses learning and behavior in Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887309188-TNBKCVG5L6DKUEYK6NAZ/image-asset.png Developmental & Behavioral Issues in Myhre Syndrome - Brain Health Amy Morgan, Ph.D, ABPP, discusses learning and behavior in Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887165908-H2EZMBFSRACQJTGQHT10/image-asset.png Developmental & Behavioral Issues in Myhre Syndrome - Myhre Syndrome Psychiatry Robin Thom, MD, discusses psychiatric conditions in individuals with autism spectrum disorder and other developmental disabilities. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663516309256-VF8WC6SL2DHS4BYIBFDO/image-asset.octet-stream Developmental & Behavioral Issues in Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887280007-WVFN68Z5SWHWW5I9T69L/image-asset.png Developmental & Behavioral Issues in Myhre Syndrome - Neuropsychology Cole Hague, PhD - talks about the pediatric clinical neuropsychologist role and the role of neuropsychologic testing. https://www.myhresyndrome.org/video-gallery-1 daily 0.75 2022-09-23 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889749601-JIIZN2XB0WWPI356EC4R/image-asset.png Introduction to Myhre Syndrome Videos - Clinical Care Guidelines https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889749601-JIIZN2XB0WWPI356EC4R/image-asset.png Introduction to Myhre Syndrome Videos - Clinical Care Guidelines https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891901574-RG3Q7X1MPTZD092UIPNM/image-asset.png Introduction to Myhre Syndrome Videos - What's next after a diagnosis - Angela Lin https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891863372-JYY7N6HTTHTTP3LB8FXQ/image-asset.jpg Introduction to Myhre Syndrome Videos - Your Child (or You) Has Myhre Syndrome - Now What? Dr. Angela Lin, MD, talks about next steps after receiving a Myhre Syndrome diagnosis. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663423773677-YARMKTQIE7D8SPY43XF8/image-asset.jpeg Introduction to Myhre Syndrome Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891553895-CN7GO4I2KXO1VGJEJ1BW/image-asset.png Introduction to Myhre Syndrome Videos - Myhre Clinic Update - Angela Lin https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891570150-UBM5TWN7DAUSY03TVI9L/image-asset.png Introduction to Myhre Syndrome Videos - Genetics: Update on the MGH Myhre Syndrome Clinic by Dr. Angela Lin https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889771371-NS0S9L8QNGSNO71WH2X7/image-asset.png Introduction to Myhre Syndrome Videos - Adults with Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891389134-2S9O7NSLZY5B1WPM9V8R/image-asset.png Introduction to Myhre Syndrome Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663423773657-435TXY1TXGXRSLSZ2520/image-asset.octet-stream Introduction to Myhre Syndrome Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663891669409-G1ICQ69340U8HSRPADMW/image-asset.png Introduction to Myhre Syndrome Videos - Mitigating the Impact of Chronic Caregiving Stress and Finding Space for You https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663885916294-LSI7VHWV38SHN2DFXQRC/Creating+a+personal+care+team+%288%29.png Introduction to Myhre Syndrome Videos - Understanding SMAD4 Dr. Lois Starr, MD, explains the genetics behind Myhre Syndrome. https://www.myhresyndrome.org/physica daily 0.75 2025-09-09 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887352753-D3EYMF2G3BCHH5WM2IYC/image-asset.png Physical Complications of Myhre Syndrome - Brain and Spine Imaging - Eleanor Scimone - https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887352753-D3EYMF2G3BCHH5WM2IYC/image-asset.png Physical Complications of Myhre Syndrome - Brain and Spine Imaging - Eleanor Scimone - https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892332160-BNGEBZBX8647T94TBJ78/image-asset.png Physical Complications of Myhre Syndrome - Pulmonology: What We Know about Breathing and the Lungs in Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889063689-4BR9G2LY4YE696UMJ8Y4/image-asset.png Physical Complications of Myhre Syndrome - Cancer in Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892432501-M9BM2N9T7FIW1BGPHH22/image-asset.png Physical Complications of Myhre Syndrome - Cardiology Dr. Mark Lindsay, MD, PHD, discusses cardiological complications with Myhre Syndorme. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892545828-7K7AH2ZGBYK33RQWRCXP/image-asset.png Physical Complications of Myhre Syndrome - Cardiology: The Heart of Myhre Syndrome by Dr. Mark Lindsay https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889293211-E826GDI4FPUTFOH5NMF8/image-asset.png Physical Complications of Myhre Syndrome - Cardiology: Clinical and Bench Research Dr. Mark Lindsay, MD, discusses clinical and bench cardiology research. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889319057-2OSL8DR07V98ASVMQJAE/image-asset.png Physical Complications of Myhre Syndrome - Constipation Issues Pediatric gastroenterologist Sarah Kadzielski, MD discusses issues related to GI and constipation. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892034350-G28XS7X8SHHSWULRHVOQ/image-asset.png Physical Complications of Myhre Syndrome - Ear, Nose & Throat Issues Michael Cohen MD, talks about the potential symptoms for ears, nose, and throat for patients with Myhre syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892168045-BBP4NU17SEPLWEA26SLA/image-asset.png Physical Complications of Myhre Syndrome - ENT Problems in Myhre Syndrome by Michael Cohen https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889847277-REDTYORGFLG41JX30MT7/image-asset.png Physical Complications of Myhre Syndrome - Endocrine Issues Lynne Levitsky, MD, discusses endocrine issues in Myhre syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889869418-TJPXZ7B9OXFJW9L5DD24/image-asset.png Physical Complications of Myhre Syndrome - GI: Feeding and Gastrointestinal Problems Dr. Sofia Douzgou Houge, MD, discusses feeding and gastrointestinal issues. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889826790-LNJZP9NRKRWZWVOECGIQ/image-asset.png Physical Complications of Myhre Syndrome - Ear Problems & Hearing Loss Dr. Michael Cohen, MD, discusses the exam and treatment of ear problems, hearing loss, and airway problems. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889921721-FMGB2LL53YTMKTRU2L5V/image-asset.png Physical Complications of Myhre Syndrome - Immune Phenotype of Myhre Syndrome Pamela A. Guerrerio, MD, PHD, discusses the immune phenotype of Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663893215560-QTVCD8IK361P2QW05ZBZ/image-asset.png Physical Complications of Myhre Syndrome - The Immune System & Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889948981-EXQ1A7VR3B78AY0Z728K/image-asset.png Physical Complications of Myhre Syndrome - Lung & Sleep Related Issues Bernard Kinane, MD, discusses lung and sleep related issues with Myhre https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663889970158-UQXYDFBM60FN276SHKXS/image-asset.png Physical Complications of Myhre Syndrome - Musculoskeleton and Joint Issues Dr Brunett-Pierri, MD, discusses musculoskeleton and joint issues in Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890011610-QBBWVDTFNMYH7VLER7FP/image-asset.png Physical Complications of Myhre Syndrome - Nephrology & Hypertension, Weizhen Tan https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890038626-KIM14YM2QWQBPSBQ30Y7/image-asset.png Physical Complications of Myhre Syndrome - Ophthalmology Gena Heidary, MD discuss neuro-ophthalmology - vision and examination of the eye. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890064054-Y67LE7KPC7ZJET2H7TV0/image-asset.png Physical Complications of Myhre Syndrome - Physical Therapy Brigette Jason talks you through the role of physical therapy, the common impairments, and interventions. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892680819-AIO5OV2UXUF5QJTSOO7W/image-asset.png Physical Complications of Myhre Syndrome - Let's Keep Moving: The Important Role of Fitness and Physical Therapy in Myhre Syndrome https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890099035-5LA1QCLBAMD9BE9ZKLQ9/image-asset.png Physical Complications of Myhre Syndrome - Pulmonology Insights Dr. T. Bernard Kinane discusses pulmonology and what we know from other syndromes. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890117848-TF1YTU01Q2DKD9LRONTH/image-asset.png Physical Complications of Myhre Syndrome - Skin, Hair, and Nail Issues Evelyn Lilly, MD, talks us through how the skin, hair and nails are affected by Myhre syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663513149094-VN4WJDVU8HFH03496CKX/image-asset.jpeg Physical Complications of Myhre Syndrome - Brain and Spine Imaging Eleanor Scimone, BS, CRA, shares the findings from the brain and spine imaging in the patients seen at the MGH Myhre Syndrome Clinic. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663890137805-QLZH25G8OZQRAHIE92F1/image-asset.png Physical Complications of Myhre Syndrome - Stiff Skin and Joints Dr. Nicola Brunetti-Pierri, MD, discusses skin and joint issues. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663513149074-C6MCW070UOJO6E31SYS9/image-asset.octet-stream Physical Complications of Myhre Syndrome https://www.myhresyndrome.org/research-videos daily 0.75 2022-09-23 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887010836-5SZ2XIOJE6H6H7M0EY3M/image-asset.png Research Videos - Jackie Lee - Myhre Syndrome Foundation Research Update https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887010836-5SZ2XIOJE6H6H7M0EY3M/image-asset.png Research Videos - Jackie Lee - Myhre Syndrome Foundation Research Update https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663637589202-M0D655UTPVNCL3OFIAF1/image-asset.octet-stream Research Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663886769433-B54IGQLXJ1R8YUIAYWXB/image-asset.png Research Videos - Research - Creating A Mouse Model https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663892762798-PML16BW5CBWX59ROQQ4K/image-asset.png Research Videos - Research about Myhre Syndrome, Asks Questions, Partners with Patients by Dr. Valerie Cormier Daire https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663886856200-RKNUQCUVJFOBETXBU557/image-asset.png Research Videos - CoRDS Registry https://www.myhresyndrome.org/community-videos daily 0.75 2022-09-22 https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887049579-35MVODZ1T2VEKPDJTTCH/image-asset.png Community Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887049579-35MVODZ1T2VEKPDJTTCH/image-asset.png Community Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887071767-CJUYCKDGODWR2PNMUB1L/image-asset.png Community Videos - Myhre & Me - Personal Experience: Holli Cranfill's Story https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887092375-GKB5HY5MJJQKYXFPTC6U/image-asset.png Community Videos - Myhre & Me - Parent Experience - Kate Wears https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887110844-JMOXO972MA73L0YIDKYW/image-asset.png Community Videos - Myhre, My Sister & Me Mary Young speaks about her sister who has Myhre Syndrome. https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663633637733-LFWD9YO8A1Y58X8KX8B4/image-asset.octet-stream Community Videos https://images.squarespace-cdn.com/content/v1/5c7804b5797f7410f57b25ea/1663887133554-G5Z200401M2TXZD8T7W2/image-asset.png Community Videos - April and Alec demonstrate ASL https://www.myhresyndrome.org/store daily 0.75 2023-05-26