http://www.draccon.com/dracaena-report daily 0.75 2025-12-02 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1497121732443-8U9BLLZN1UTB44Z6B2PY/teide+web+bw.jpg DRACAENA REPORT http://www.draccon.com/dracaena-report/2025forum monthly 0.5 2025-12-02 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/2bf95e3f-2d64-4596-9537-bdafd1b1e31c/Screenshot+2025-11-01+at+9.14.30%E2%80%AFPM.png DRACAENA REPORT - MAIN LESSONS FROM THE 2025 CDKL5 FORUM - Make it stand out Image: Forum Director Dr Dan Lavery (Loulou Foundation); Dr Enya Paschen (Ulysses Neuroscience); Prof Peter Kind (University of Edinburgh); summary of some CDKL5 direct targets; Ulysses Neuroscience seizure platform. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/8be8c07e-a2f5-4efb-85fc-820ae18890ce/Screenshot+2025-11-01+at+9.14.44%E2%80%AFPM.png DRACAENA REPORT - MAIN LESSONS FROM THE 2025 CDKL5 FORUM - Make it stand out Image: CDD pipeline listing most programs in development; moderator Prof Orrin Devinsky (NYU Langone); Angel Neurotherapeutics program; fenfluramine activity (UCB Pharma); Bexicaserin trial recruitment sites (Lundbeck); Praxis CSO Prof Steve Petrou. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/34725553-3099-4e55-aa7d-e2cec847e68f/Screenshot+2025-11-01+at+9.14.58%E2%80%AFPM.png DRACAENA REPORT - MAIN LESSONS FROM THE 2025 CDKL5 FORUM - Make it stand out Image: Keynote speaker and moderator Prof Jim Wilson (Gemma Bio); Elaaj gene therapy program (Loulou Foundation); Dr Russ Addis (Loulou Foundation); Dr Kyle Fink (UC Davis); UC Davis X reactivation project; Andrew Steinsapir (Apertura Gene Therapy) https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/b7d9b1b7-34a7-4659-b69e-bded2d1cdd32/Screenshot+2025-11-05+at+8.05.50%E2%80%AFAM.png DRACAENA REPORT - MAIN LESSONS FROM THE 2025 CDKL5 FORUM - Make it stand out Image: Panel discussion “Where do we stand today with clinical outcome measures for CDD?”. Dr Xavier Liogier (Loulou Foundation); Dr Barry Ticho (Stoke Therapeutics); Dr Heather Olson (BCH); Dr Jenny Downs (Kids Research Institute, Perth); missing in the image Prof Tim Benke (University of Colorado); Dr Billy Dunn (Loulou Foundation, former FDA) https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/01b60a29-7708-4b58-bd89-bedf4c323300/Screenshot+2025-11-01+at+9.15.29%E2%80%AFPM.png DRACAENA REPORT - MAIN LESSONS FROM THE 2025 CDKL5 FORUM - Make it stand out Image: Lili Hass message and picture (CURE5); Dr Maria Luisa Tutino message; Dr Maria Luisa Tutino together with Lynn and Majid Jafar; Dr Katheryn Frame presentation and picture (CDKL5 Alliance) http://www.draccon.com/dracaena-report/2025forocdkl5 monthly 0.5 2025-12-02 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/48065f43-9ab8-4c1a-8283-a2665782724a/Screenshot+2025-11-01+at+9.14.30%E2%80%AFPM.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2025 - Make it stand out Fotos: Dr Dan Lavery (Fundación Loulou); Dra Enya Paschen (Ulysses Neuroscience); Prof Peter Kind (Universidad de Edimburgo); Imagen de algunas de las funciones clave de CDKL5; Resumen de pruebas de epilepsia en ratones con CDD en Ulysses Neuroscience. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/5e816667-9148-4002-8307-eea0b28c5c67/Screenshot+2025-11-01+at+9.14.44%E2%80%AFPM.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2025 - Make it stand out Fotos: lista de programas terapéuticos en desarrollo para CDD que presentó Dan Lavery; Prof Orrin Devinsky (Universidad de Nueva York); cómo funciona el fármaco de Angel Neurotherapeutics sobre el citoesqueleto; cómo funciona fenfluramina; lista de hospitales que tienen el ensayo clínico de bexicaserina (Lundbeck); ponente de Praxis el Dr Steve Petrou. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/ba7d9aa9-e917-4ef3-9059-d3848c44a2db/Screenshot+2025-11-01+at+9.14.58%E2%80%AFPM.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2025 - Make it stand out Fotos: Prof Jim Wilson en su ponencia principal; diapositiva y ponente de la Fundación Loulou el Dr Russ Addis (terapia génica); ponente y diapositiva de la Universidad de California Davis el Dr Kyle Fink (terapia génica de reactivación del cromosoma X); ponente Andrew Steinsapir (Apertura Gene Therapy) https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/c1804456-b14e-4952-b87c-1b8ed33c0c0d/Screenshot+2025-11-05+at+8.05.50%E2%80%AFAM.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2025 - Make it stand out Foto: el panel de la sesión de escalas clínicas, con el Dr Xavier Ligioer (Fundación Loulou), el Dr Barry Ticho (Stoke Therapeutics), la Dra Heather Olson (Hospital Infantil de Boston), la Dra Jenny Downs (Kids Research Institute en Australia), falta en la imagen el Prof Tim Benke (Universidad de Colorado) y por último el ex-Director de neurología de la FDA actualmente con la Fundación Loulou el Dr Billy Dunn. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/f80491e2-d647-4c76-b0d7-f94b7a7f0243/Screenshot+2025-11-01+at+9.15.29%E2%80%AFPM.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2025 - Make it stand out Fotos: Mensaje y ponencia de Lili Hass (CURE5); mensaje de la Dra Maria Luisa Tutino; foto de Maria Luisa con Lynn y Majid Jafar; mensaje y foto de la Dra Katheryn Frame (Alianza CDKL5). http://www.draccon.com/dracaena-report/rome2025 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/a08a1ab3-774c-4e12-8540-8ad3dc7bd734/Screenshot+2025-07-03+at+5.53.40%E2%80%AFPM.png DRACAENA REPORT - CDKL5 ALL IN(VOLVED) 2025 - 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/v1/54589576e4b01c74d3bdbdd3/7853128e-06bc-4610-9d67-2b0bf31e0c6d/Screenshot+2025-07-03+at+5.48.11%E2%80%AFPM.png DRACAENA REPORT - CDKL5 ALL IN(VOLVED) 2025 - 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/v1/54589576e4b01c74d3bdbdd3/719dabd1-9868-4bf3-af64-63bc974730d1/Screenshot+2025-07-03+at+5.44.54%E2%80%AFPM.png DRACAENA REPORT - CDKL5 ALL IN(VOLVED) 2025 - 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/v1/54589576e4b01c74d3bdbdd3/cb6e6c88-5b1b-4bcf-b80e-c938ca43b626/Picture12.png DRACAENA REPORT - CDKL5 ALL IN(VOLVED) 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/2024aes monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/2932fdc6-900b-4baf-b094-7cdf21b3ce19/Screen+Shot+2024-12-14+at+11.55.44+AM.png DRACAENA REPORT - AES 2024: THE FUTURE IS NOW - 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/v1/54589576e4b01c74d3bdbdd3/bc9c7de0-e76d-43ff-9253-472a80a04a9c/Screen+Shot+2024-12-14+at+11.55.38+AM.png DRACAENA REPORT - AES 2024: THE FUTURE IS NOW - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/2024forum monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/8e49d9f0-5e4c-429a-b27c-a52ca6b893ce/new+biology.png DRACAENA REPORT - MAIN LESSONS FROM THE 2024 CDKL5 FORUM - Make it stand out Image: Researcher Maria del Carmen Martin Carrascosa (CIPF), Forum Director Dan Lavery (from Loulou Foundation), and research doctor Josephine Thinwa (UTSouthwestern). https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/f6b03dc2-10a3-4325-bacf-e3027356da98/platforms.png DRACAENA REPORT - MAIN LESSONS FROM THE 2024 CDKL5 FORUM - Make it stand out Image: slide from CDD mouse testing platform, slide from CDD iPSC-derived neuron platform, and researchers Liz Buttermore (BCH) and Jasmine Carter (Loulou Foundation) during the breakout session on iPS cells. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/7dfade4e-08c7-43d3-a837-bba4ec2d8278/candid.png DRACAENA REPORT - MAIN LESSONS FROM THE 2024 CDKL5 FORUM - Make it stand out Image: Xavier Liogier (Loulou Foundation) presents an update on CANDID, and group discussion with doctors and patient representatives. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1b5a3013-4a86-4444-91b2-fbf7073cd2d1/the+now.png DRACAENA REPORT - MAIN LESSONS FROM THE 2024 CDKL5 FORUM - Make it stand out Images: Sabine Bongardt from UCB Pharma, Randall Kaye from Longboard, and a slide from Elisa Borghi’s presentation on the pre-biotic and pro-biotic supplement trial. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/600559f4-80a0-4499-b426-c8194159c327/the+near+now.png DRACAENA REPORT - MAIN LESSONS FROM THE 2024 CDKL5 FORUM - Make it stand out Images top: Ultragenyx’s Emil Kakkis and slide from their gene therapy program. Slide from Lario Therapeutics. Images bottom: UCDavis’ gene therapy slide and Kyle Fink. Slide from the Loulou Foundation and Penn gene therapy presentation. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1caea513-efb4-4c03-b091-fd26a1000be3/how+we+can+help.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2024 CDKL5 FORUM - Make it stand out Industry panel, from left to right: Ralf Schmid (Novartis), Sharyl Fyffe-Maricich (Ultragenyx), Randall Kaye (Longboard), Brian Moseley (UCB) and moderator Majid Jafar (Loulou Foundation) https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/69a7f98f-c5c6-4816-b54d-0d7e9a1b23b5/families.png DRACAENA REPORT - MAIN LESSONS FROM THE 2024 CDKL5 FORUM - Make it stand out Image: Majid and Lynn Jafar (Loulou Foundation, parents to Loulou); Lily Howard (Hope-4-Harper, sister to Harper); Andreas and Ana Born (CURE5; parents to Siena); and Heike Knip (CDKL5 Alliance President, dad to Valentina) http://www.draccon.com/dracaena-report/2024forocdkl5 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/73c32138-67de-4ed3-ba5b-1ba803da67e4/new+biology.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2024 - Make it stand out Imágenes: la investigadora Maria del Carmen Martin Carrascosa (CIPF), el Director de Foro Dan Lavery (from Loulou Foundation), y la medico e investigadora Josephine Thinwa (UTSouthwestern). https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/84cbc4b1-21b2-46fd-9d37-67add0a7440c/platforms.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2024 - Make it stand out Imagen: diapo de la plataforma de evaluación de terapias en ratones con CDD; diapo de la plataforma de evaluación de fármacos en células derivadas de pacientes; y las investigadoras Liz Buttermore (BCH) y Jasmine Carter (Loulou Foundation) durante la sesión paralela sobre células iPS. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/16f58f77-b2d5-40b2-b595-debeb58e71bd/candid.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2024 - Make it stand out Imagen: Xavier Liogier (Fundación Loulou) presenta los resultados hasta ahora de CANDID, y un grupo de médicos y representantes de pacientes participan en una discusión sobre el estudio. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/22e48471-a86d-4649-ab8d-f2a39cbeeda4/the+now.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2024 - Make it stand out Imágenes: Sabine Bongardt de UCB Pharma, Randall Kaye de Longboard, y una diapo de la presentación de Elisa Borghi sobre el ensayo con el suplemento pre-biótico y post-biótico. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/27f7dd0c-4a21-485f-83af-d9754d253b91/the+near+now.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2024 - Make it stand out Imágenes arriba: Emil Kakkis de Ultragenyx y una diapo de su terapia génica. Diapo de Lario Therapeutics. Imágenes abajo: Diapo de la terpia de UCDavis y Kyle Fink de UCDavis; diapo sobre la terpia génica de la Fundación Loulou y Penn. https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/353e190e-b02e-45f4-8dc6-742aa437750f/how+we+can+help.jpg DRACAENA REPORT - REPASO DEL FORO CDKL5 2024 - Make it stand out Panel de expertos, de izquiera a derecha: Ralf Schmid (Novartis), Sharyl Fyffe-Maricich (Ultragenyx), Randall Kaye (Longboard), Brian Moseley (UCB) y el moderador Majid Jafar (Fundación Loulou) https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/22b61cb5-3d29-474b-87f2-e57ead1a491b/families.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2024 - Make it stand out Imagen: Majid y Lynn Jafar (Fundación Loulou, padres de Loulou); Lily Howard (Hope-4-Harper, hermana Harper); Andreas y Ana Born (CURE5; padres de Siena); y Heike Knip (Presidente de la CDKL5 Alliance y padre de Valentina) http://www.draccon.com/dracaena-report/2024/9/12/haploinsufficiency monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/de32e208-85e2-43c4-a62b-fedf3a4ebad3/Screen+Shot+2024-09-12+at+6.05.59+PM.png DRACAENA REPORT - DRAVET SYNDROME AND HOW WE CAN TREAT A HAPLOINSUFFICIENCY - Make it stand out We often explain Dravet syndrome as only having 50% of the Nav1.1 sodium channels https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/8d77cf79-cb23-4837-aa38-4f93ae6533e5/Screen+Shot+2024-09-12+at+6.08.31+PM.png DRACAENA REPORT - DRAVET SYNDROME AND HOW WE CAN TREAT A HAPLOINSUFFICIENCY - Make it stand out Missense mutations still result in only half of the sodium channels (the sodium doors) being functional https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/2ff665f7-3c8d-4337-8f31-fdf2e38fa508/Screen+Shot+2024-09-12+at+6.10.34+PM.png DRACAENA REPORT - DRAVET SYNDROME AND HOW WE CAN TREAT A HAPLOINSUFFICIENCY - Make it stand out Gene therapies and ASOs that increase expression from the SCN1A gene or mRNA are also in trials for patients with missense mutations in SCN1A http://www.draccon.com/dracaena-report/syngap2023 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/4ee4b702-610d-4b33-8b25-36e488b15ae4/Screen+Shot+2023-12-10+at+9.46.52+PM.png DRACAENA REPORT - What I learnt at the SYNGAP Conference 2023 - 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/v1/54589576e4b01c74d3bdbdd3/4e7cd33a-52ef-42e9-962f-a5393198bcc3/IMG_8561.jpg DRACAENA REPORT - What I learnt at the SYNGAP Conference 2023 - 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/v1/54589576e4b01c74d3bdbdd3/a7226b26-ae99-431e-873d-411e563dbb4f/Screen+Shot+2023-12-10+at+9.46.34+PM.png DRACAENA REPORT - What I learnt at the SYNGAP Conference 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/aes2023 monthly 0.5 2025-10-21 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/4c6f1259-832a-4cb5-967e-2e7b913c259e/Screen+Shot+2023-12-10+at+7.43.46+PM.png DRACAENA REPORT - TOP 5 INSIGHTS FROM THE AMERICAN EPILEPSY SOCIETY MEETING 2023 - 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/v1/54589576e4b01c74d3bdbdd3/3322dff3-cb69-4835-91fd-0630fc07eece/Screen+Shot+2023-12-10+at+8.08.14+PM.png DRACAENA REPORT - TOP 5 INSIGHTS FROM THE AMERICAN EPILEPSY SOCIETY MEETING 2023 - 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/v1/54589576e4b01c74d3bdbdd3/2c32c5a4-955b-4aaf-9f42-273e7de2320d/Screen+Shot+2023-12-10+at+7.40.18+PM.png DRACAENA REPORT - TOP 5 INSIGHTS FROM THE AMERICAN EPILEPSY SOCIETY MEETING 2023 - 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/v1/54589576e4b01c74d3bdbdd3/25820f9c-0111-4074-b778-8f716300ecd5/IMG_8592.jpg DRACAENA REPORT - TOP 5 INSIGHTS FROM THE AMERICAN EPILEPSY SOCIETY MEETING 2023 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/2023forocdkl5 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/c885b609-2edc-4409-8666-809569520a47/first.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2023 - Make it stand out FORO 2023 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/f6ba9e71-4719-40e5-9d7d-3a46c75f9556/knowledge.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2023 - Make it stand out Rechazando texturas y aprendiendo de Rett https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/b9739380-1f13-4365-818f-b7b85688c77d/diagn+and+tools.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2023 - Make it stand out Deshaciendo VUS y epilepsia en ratas con CDD https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/5235f4f9-3b39-4f50-adb8-1e2abe6e1bfe/pipeline.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2023 - Make it stand out Presentaciones de empresas con terapias en desarrollo https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/c5f67fe7-4c04-4545-8386-081af18149e3/biomarkers+and+outcomes.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2023 - Make it stand out Proyecto de biomarcadores de Ulysses y curva de reclutamiento exponencial de CANDID https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/78fd121b-9d29-491b-bd3a-dd21e75d41c1/gene+therapies.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2023 - Make it stand out Varias terapias génicas en desarrollo https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/f212b07e-8217-4dec-b419-e907f9a089a5/fly.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2023 - Make it stand out Aprendiendo de la evolución https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/82c6d70f-fa68-46ed-bf07-1bc9d65ddda5/patients.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2023 - Make it stand out La voz de las familias en el Foro 2023 http://www.draccon.com/dracaena-report/cdkl5forum2023 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/afe218ae-37bf-42bc-bb05-cabe0067f154/Screen+Shot+2023-11-10+at+2.35.13+PM.png DRACAENA REPORT - MAIN LESSONS FROM THE 2023 CDKL5 FORUM - Make it stand out 2023 CDKL5 Forum https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/e656ebad-9a4a-4f53-9231-29628107182b/knowledge.png DRACAENA REPORT - MAIN LESSONS FROM THE 2023 CDKL5 FORUM - Make it stand out Food texture aversion and learning from the Rett syndrome field https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/22d79186-4084-4bc4-a499-5ec06c9145a4/diagn+and+tools.png DRACAENA REPORT - MAIN LESSONS FROM THE 2023 CDKL5 FORUM - Make it stand out VUS databases and CDD rat seizure model https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/618bc1d9-7a70-426b-a06d-dfea84709dc9/pipeline.png DRACAENA REPORT - MAIN LESSONS FROM THE 2023 CDKL5 FORUM - Make it stand out CDD therapeutic pipeline presentations https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/8e96a10a-0083-4a2c-b3f2-0b707a15181d/biomarkers+and+outcomes.png DRACAENA REPORT - MAIN LESSONS FROM THE 2023 CDKL5 FORUM - Make it stand out Ulysses biomarker project and exponential CANDID recruitment curve https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1dba9078-3b87-4b3e-b4d7-892dd86e1dd8/gene+therapies.png DRACAENA REPORT - MAIN LESSONS FROM THE 2023 CDKL5 FORUM - Make it stand out Multiple gene therapies in development https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/fbac2a66-6251-436a-810b-31a477a965fc/fly.png DRACAENA REPORT - MAIN LESSONS FROM THE 2023 CDKL5 FORUM - Make it stand out Learning from evolution https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/cefdfe7e-ee3d-4bb8-b53a-2bc1e67dec6d/patients.png DRACAENA REPORT - MAIN LESSONS FROM THE 2023 CDKL5 FORUM - Make it stand out Voice of the patient at the 2023 CDKL5 Forum http://www.draccon.com/dracaena-report/gemelos monthly 0.5 2025-09-14 http://www.draccon.com/dracaena-report/iec2023 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/24f20288-92c7-4636-922f-8c94ec7fd215/IMG_5938.jpg DRACAENA REPORT - IEC2023 Dublin - Make it stand out Amber Freed from SLC6A1 Connect https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/b8f7886f-0504-40e9-ab7e-e38130ab1f7d/IMG_5961.jpg DRACAENA REPORT - IEC2023 Dublin - Make it stand out Dr Scott Demarest on disease-modifying trials for DEEs https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/5cc738e4-4a71-44d8-9d84-bde1b9e6551f/IMG_5962.jpg DRACAENA REPORT - IEC2023 Dublin - Make it stand out Prominent stands with drugs for Dravet syndrome and LGS https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/9b93096b-bfa8-42fd-9469-a8af48f5c479/IMG_6036.jpg DRACAENA REPORT - IEC2023 Dublin - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/aes2022 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/12c300f7-4b24-49e6-9075-6e4fb7ea337f/Picture1.png DRACAENA REPORT - AES 2022: genetic epilepsies reach escape velocity - 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/v1/54589576e4b01c74d3bdbdd3/dc0de7b5-03a4-44ee-80fe-e60fe2799f01/Picture4.png DRACAENA REPORT - AES 2022: genetic epilepsies reach escape velocity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/cdkl5forum2022 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/562b8389-29ea-406e-8bff-0b33185fcd8f/boston.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2022 CDKL5 FORUM - 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/v1/54589576e4b01c74d3bdbdd3/6dd87508-3d4c-4fba-98dd-66a11106ce9c/kakkis.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2022 CDKL5 FORUM - 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/v1/54589576e4b01c74d3bdbdd3/494d3368-c670-4e8c-baf7-6d4367e53b3b/Summary+approaches.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2022 CDKL5 FORUM - 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/v1/54589576e4b01c74d3bdbdd3/80909053-3950-44a3-9b4c-c26afd72f291/models.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2022 CDKL5 FORUM - 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/v1/54589576e4b01c74d3bdbdd3/166d8fa2-581c-4f16-857e-b78abe505269/registry.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2022 CDKL5 FORUM - 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/v1/54589576e4b01c74d3bdbdd3/c36a3d0c-dfab-407b-ba8b-e65b852d7820/Natalie.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2022 CDKL5 FORUM - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/2022forocdkl5 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/017242c7-e9f2-4219-90be-9b614359df36/boston.jpg DRACAENA REPORT - REPASO DEL FORO CDKL5 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/v1/54589576e4b01c74d3bdbdd3/205c53fe-72aa-49f9-b98e-6a022bf7eae6/kakkis.jpg DRACAENA REPORT - REPASO DEL FORO CDKL5 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/v1/54589576e4b01c74d3bdbdd3/9177076e-d9fa-409a-9947-3e64132fb4f1/summary+ES.jpg DRACAENA REPORT - REPASO DEL FORO CDKL5 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/v1/54589576e4b01c74d3bdbdd3/9028e2e2-3c59-4bdc-ad9a-466a9a02e16a/models.jpg DRACAENA REPORT - REPASO DEL FORO CDKL5 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/v1/54589576e4b01c74d3bdbdd3/2f5af5aa-bcbf-44b8-86d5-391030d65adb/registry.jpg DRACAENA REPORT - REPASO DEL FORO CDKL5 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/v1/54589576e4b01c74d3bdbdd3/b11c8eee-15e0-45bb-a543-fae9f8f8ed94/Natalie.jpg DRACAENA REPORT - REPASO DEL FORO CDKL5 2022 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/aes2021 monthly 0.5 2025-09-14 http://www.draccon.com/dracaena-report/cdkl5forum2021 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/4730d7b7-46b7-48b8-8c1a-f5a3a5019cf6/Screenshot+2021-11-06+at+15.56.52.png DRACAENA REPORT - MAIN LESSONS FROM THE 2021 CDKL5 FORUM - 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/v1/54589576e4b01c74d3bdbdd3/ad05031f-7802-49e5-a85b-9db26490ef54/Preliminary+Open-Label+Extension+Data.png DRACAENA REPORT - MAIN LESSONS FROM THE 2021 CDKL5 FORUM - 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/v1/54589576e4b01c74d3bdbdd3/21415bf7-7181-492e-a526-193bc7818333/Screenshot+2021-11-06+at+15.56.45.png DRACAENA REPORT - MAIN LESSONS FROM THE 2021 CDKL5 FORUM - 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/v1/54589576e4b01c74d3bdbdd3/b8209a2c-b08a-40b4-bd70-52720b0a3e11/CANDID+study+CDD DRACAENA REPORT - MAIN LESSONS FROM THE 2021 CDKL5 FORUM - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/cdkl5-is-reversible monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1634388704046-VVJY7UNYLWYLKSXOX3CT/Screenshot+2021-10-16+at+14.07.53.png DRACAENA REPORT - CDKL5 DEFICIENCY IS REVERSIBLE - 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/v1/54589576e4b01c74d3bdbdd3/1634388610665-JWTUHH2KB8W104W2CQL4/Screenshot+2021-10-16+at+14.10.19.png DRACAENA REPORT - CDKL5 DEFICIENCY IS REVERSIBLE - 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/v1/54589576e4b01c74d3bdbdd3/1634388660555-EIXHE9BSWGFEANPO38M8/Screenshot+2021-10-16+at+14.49.53.png DRACAENA REPORT - CDKL5 DEFICIENCY IS REVERSIBLE - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/2021/6/26/2021-cdkl5-alliance-virtual-family-conference monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1624716736016-QFT4TRPBIH4GFOS1ZNDS/Screenshot+2021-06-26+at+13.01.42.png DRACAENA REPORT - 2021 CDKL5 ALLIANCE Virtual Family Conference - 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/v1/54589576e4b01c74d3bdbdd3/1624722571837-L2J0MX0KE11A3KRE13WJ/cdkl5+gene+therapy DRACAENA REPORT - 2021 CDKL5 ALLIANCE Virtual Family Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. http://www.draccon.com/dracaena-report/2020dravetpipelineavailable monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1609334098412-NCRB07B0IXE016A6UQDB/Screen+Shot+2020-12-30+at+13.48.01.png DRACAENA REPORT - Dravet syndrome pipeline review 2020 now available http://www.draccon.com/dracaena-report/aes2020 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1608478392025-LA5GZDIZDRPAZMCG8O5S/Screen+Shot+2020-12-05+at+16.30.48.png DRACAENA REPORT - Top 5 insights from the American Epilepsy Society meeting (2020) https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1608479138583-DAQY5UY4V5XI95IQ08YU/Screen+Shot+2020-12-20+at+16.44.58.png DRACAENA REPORT - Top 5 insights from the American Epilepsy Society meeting (2020) https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1608478794585-KGSOUA7RE21Z6PHU39JF/Screen+Shot+2020-12-20+at+16.38.38.png DRACAENA REPORT - Top 5 insights from the American Epilepsy Society meeting (2020) https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1608478767513-F4QN1NMR9ZYYMW6EHO2E/Screen+Shot+2020-12-20+at+16.38.53.png DRACAENA REPORT - Top 5 insights from the American Epilepsy Society meeting (2020) http://www.draccon.com/dracaena-report/cdkl5forum2020 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1603037942954-EJE9C09UEMGHJ8DDHTVY/Screen+Shot+2020-10-12+at+14.53.54.png DRACAENA REPORT - MAIN LESSONS FROM THE 2020 CDKL5 FORUM https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1603038853058-9VRUIMF3VL5RN4GCES5K/toolbox.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2020 CDKL5 FORUM https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1603040115020-RMUT3CS52JKMIDWPSDRF/three-gold-cups.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2020 CDKL5 FORUM http://www.draccon.com/dracaena-report/2020forocdkl5 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1603055015618-XF66841LN3M75JUMG52M/Screen+Shot+2020-10-12+at+14.53.54.png DRACAENA REPORT - REPASO DEL FORO CDKL5 2020 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1603055535371-XCL151LDJAF1E9BDCEJJ/toolbox.jpg DRACAENA REPORT - REPASO DEL FORO CDKL5 2020 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1603055771031-ZSKFIJ969TBC1QKWAE6K/three-gold-cups.jpg DRACAENA REPORT - REPASO DEL FORO CDKL5 2020 http://www.draccon.com/dracaena-report/2020/9/13/gene-therapy-for-dravet-syndrome-2020-update monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1600011313846-KKCBKNE7YX9UTF78E2J7/36-1.png DRACAENA REPORT - Gene therapy for Dravet syndrome – 2020 update https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1600012124971-G827PNMYMDLBSREHF4B5/regulation+of+scn1a+expression.png DRACAENA REPORT - Gene therapy for Dravet syndrome – 2020 update https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1600015052681-BXPHLFRQ83LN1TSEOR5E/gene+therapy+dravet+syndrome.png DRACAENA REPORT - Gene therapy for Dravet syndrome – 2020 update http://www.draccon.com/dracaena-report/icd10 monthly 0.5 2025-09-14 http://www.draccon.com/dracaena-report/2020/1/14/quien-puede-entrar-en-un-ensayo-clnico monthly 0.5 2025-09-14 http://www.draccon.com/dracaena-report/aes-2019-es monthly 0.5 2025-09-14 http://www.draccon.com/dracaena-report/aes-2019 monthly 0.5 2025-09-14 http://www.draccon.com/dracaena-report/2019forocdkl5 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573393921291-1X739KMML8NJBQZLM0OD/dan+lavery+cdkl5 DRACAENA REPORT - Repaso del Foro CDKL5 2019 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573404778790-WML6F3QTVDZAALSMA3GW/IMG_8313.jpg DRACAENA REPORT - Repaso del Foro CDKL5 2019 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573406797691-HJVZFDBD2SBALJKXDMO5/IMG_8431.jpg DRACAENA REPORT - Repaso del Foro CDKL5 2019 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573405505284-70VT9H7KOVD9J2U8CMRS/tratamientos+cdkl5 DRACAENA REPORT - Repaso del Foro CDKL5 2019 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573405583745-2NK8ZZPMVB0RK7BT6UTV/IMG_8371.jpg DRACAENA REPORT - Repaso del Foro CDKL5 2019 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573406287498-8YS220FHIEZF2D9VHYIV/IMG_8416.jpg DRACAENA REPORT - Repaso del Foro CDKL5 2019 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573406552858-QI9QSTF00I6QY26QTO3U/Screen+Shot+2019-11-10+at+18.22.11.png DRACAENA REPORT - Repaso del Foro CDKL5 2019 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573406862896-OOILHSW7MW04DVYLYYOZ/0000000+%281%29.jpg DRACAENA REPORT - Repaso del Foro CDKL5 2019 http://www.draccon.com/dracaena-report/cdkl5forum2019 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573391790436-JEWRZQ2P8FGSNXGGCP87/san+lavery+cdkl5 DRACAENA REPORT - MAIN LESSONS FROM THE 2019 CDKL5 FORUM https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573407172649-DG2TI0CALV61C0ESLHO9/IMG_8313.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2019 CDKL5 FORUM https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573407217510-SV0D90G5D1V31095NNSD/IMG_8431.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2019 CDKL5 FORUM https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573392229378-6VGDZ6BHCHSSRA6I52WO/Screen+Shot+2019-11-10+at+14.23.30.png DRACAENA REPORT - MAIN LESSONS FROM THE 2019 CDKL5 FORUM https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573392295299-18KOHH9FQH9KOKND69F2/david+liu+jim+wilson+cdkl5 DRACAENA REPORT - MAIN LESSONS FROM THE 2019 CDKL5 FORUM https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573392517416-W2205BL4USYUB2M9N824/tim+yu+cdkl5 DRACAENA REPORT - MAIN LESSONS FROM THE 2019 CDKL5 FORUM https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573393271890-91V22ABXUCH8TXO6TG9Z/cdkl5+therapies DRACAENA REPORT - MAIN LESSONS FROM THE 2019 CDKL5 FORUM https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1573392963315-QX0K6X3SJR7KCHB8T8OS/IMG_8256%2B2.jpg DRACAENA REPORT - MAIN LESSONS FROM THE 2019 CDKL5 FORUM http://www.draccon.com/dracaena-report/dravetpipeline2019 monthly 0.5 2025-09-14 http://www.draccon.com/dracaena-report/2019cdkl5alliance monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1561482159996-WF9RYOWQZG87IFJKVP36/CDKL5%2BAlliance%2BEdinburgh.jpg DRACAENA REPORT - What the CDKL5 Deficiency community can teach us about patient centricity https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1561482210794-YZZHKRDJUV4J0OLQX871/IMG_4955.jpg DRACAENA REPORT - What the CDKL5 Deficiency community can teach us about patient centricity Carol-Anne Partridge, CDKL5 UK https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1561482292923-BF8DVW43JCEMWYM9WLZU/Patient+experience+workshop+CDKL5 DRACAENA REPORT - What the CDKL5 Deficiency community can teach us about patient centricity Patient Experience Workshop https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1561482404144-GXSH5DTJ2BHF61X1HH5K/CDKL5+Alliance DRACAENA REPORT - What the CDKL5 Deficiency community can teach us about patient centricity “There are 5 Fundamental Forces of Nature: gravity, weak nuclear force, strong nuclear force, one that I can never remember, and Carol-Anne Partridge” . 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Main lessons from the European Congress on Epilepsy 2018 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1535637245948-2CUBMJLP2G3L6DY68BD9/00000001.jpg DRACAENA REPORT - Main lessons from the European Congress on Epilepsy 2018 http://www.draccon.com/dracaena-report/pipeline-en-espanol monthly 0.5 2026-02-03 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1532377135980-KUJS3PFDGZG23PBHADBA/Screen+Shot+2018-07-23+at+22.08.05.png DRACAENA REPORT - En Español - Fármacos en camino para el síndrome de Dravet http://www.draccon.com/dracaena-report/2018/7/23/dravet-syndrome-drug-development-pipeline-review-2018 monthly 0.5 2026-02-03 http://www.draccon.com/dracaena-report/2018/2/2/what-you-should-know-about-patient-data-after-may-2018 monthly 0.5 2025-09-14 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1517573684063-GA38Z0ZKM224SJY4XDOB/Screen+Shot+2018-02-02+at+12.00.13+PM.png DRACAENA REPORT - What you should know about patient data after May 2018 https://images.squarespace-cdn.com/content/v1/54589576e4b01c74d3bdbdd3/1517576900137-E8PY9UFHF5TI9JU5ZUFU/Screen+Shot+2018-02-02+at+2.07.34+PM.png DRACAENA REPORT - 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