https://www.rhizotrial.org/updates daily 0.75 2026-02-09 https://www.rhizotrial.org/updates/2026/2/9/virtual-update-registration monthly 0.5 2026-02-09 https://www.rhizotrial.org/updates/2025/2/27/voice-of-the-patient-report-available monthly 0.5 2025-02-27 https://www.rhizotrial.org/updates/2025/2/4/mld-recruiting-study-on-useability-of-a-new-blood-collection-device monthly 0.5 2025-02-04 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/6b4da082-92ce-4f13-8a6a-d118b24ddd86/TAP+Micro+Select.jpg Updates - MLD Recruiting Study on Useability of a New Blood Collection Device - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rhizotrial.org/updates/2024/11/7/vruyphic8wxliv5e3jqxl5yzv25arq monthly 0.5 2024-11-08 https://www.rhizotrial.org/updates/2024/10/16/rcdp-therapeutic-trial-update monthly 0.5 2024-10-16 https://www.rhizotrial.org/updates/2024/5/8/patient-focused-drug-development-session monthly 0.5 2024-05-08 https://www.rhizotrial.org/updates/2022/9/2/virtual-information-session-g6ygw-rf7m6 monthly 0.5 2024-02-12 https://www.rhizotrial.org/updates/2024/2/12/mld-announces-completion-of-dosing-with-plasmalogen-precursor-ppi-1011-in-its-phase-i-clinical-trial monthly 0.5 2024-02-12 https://www.rhizotrial.org/updates/2023/6/9/virtual-update-and-qampa monthly 0.5 2023-06-09 https://www.rhizotrial.org/updates/2023/6/6/med-life-discoveries-receives-no-objection-letter-from-health-canada-to-begin-a-healthy-adult-phase-1-trial-for-ppi-1011 monthly 0.5 2023-06-06 https://www.rhizotrial.org/updates/2023/1/14/excellent-article-on-supplements-and-rare-disease monthly 0.5 2023-01-16 https://www.rhizotrial.org/updates/2022/9/2/virtual-information-session-g6ygw monthly 0.5 2024-02-12 https://www.rhizotrial.org/updates/2022/9/2/virtual-information-session monthly 0.5 2022-11-28 https://www.rhizotrial.org/updates/2022/8/16/rcdp-program-update monthly 0.5 2022-08-16 https://www.rhizotrial.org/updates/2022/4/1/mld-on-location-in-wilmington monthly 0.5 2022-04-01 https://www.rhizotrial.org/updates/2021/11/1/welcoming-aicha-to-the-mld-team monthly 0.5 2021-11-02 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/403358d3-2b07-411c-a48b-32e8f99f8087/Aicha1.jpg Updates - Welcoming Aicha to the MLD team - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rhizotrial.org/updates/2021/8/22/updated-rhizotrial-travel-policy monthly 0.5 2021-08-25 https://www.rhizotrial.org/updates/2021/7/6/mld-publishes-new-paper-on-the-estimated-prevalence-of-rcdp monthly 0.5 2021-07-06 https://www.rhizotrial.org/updates/2021/3/9/rare-disease-day-2021 monthly 0.5 2021-03-09 https://www.rhizotrial.org/updates/2020/10/2/natural-history-study-update monthly 0.5 2020-10-07 https://www.rhizotrial.org/updates/2020/8/11/7p5av97acjofyeivwa48l8je072ln2 monthly 0.5 2020-10-16 https://www.rhizotrial.org/updates/2020/8/19/why-a-drug monthly 0.5 2022-09-02 https://www.rhizotrial.org/updates/2020/6/26/virtual-rcdp-update monthly 0.5 2020-08-04 https://www.rhizotrial.org/updates/2020/5/15/rcdp-program-update monthly 0.5 2020-05-15 https://www.rhizotrial.org/updates/2020/3/13/trial-status-update monthly 0.5 2020-03-14 https://www.rhizotrial.org/updates/2020/2/28/rare-disease-day-2020 monthly 0.5 2020-03-10 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1582925399099-828KFSTD8BQNUEAKN8J3/RCDP+MLD+INFOGRAPHIC2JPG.jpg Updates - Rare Disease Day 2020 https://www.rhizotrial.org/updates/2020/2/7/natural-history-study-update monthly 0.5 2020-03-10 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1581347760609-CSOZNU5PFYGRNMRBSBSR/AIDHC2.jpg Updates - Natural History Study Update https://www.rhizotrial.org/updates/2020/2/7/travel-information-for-natural-history-study monthly 0.5 2020-02-10 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1581110066807-I7ZZQNL8GL8RKISKFUJ1/white-airliner-wing-on-top-of-sea-clouds-2007401.jpg Updates - Travel Information for Natural History Study https://www.rhizotrial.org/updates/2019/12/21/ppi-1040-functional-data-published monthly 0.5 2020-03-10 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1576953211150-BUDZGY0QIE5O4V3UR5FS/DMM+post+2+invert.jpg Updates - PPI-1040 Functional Data Published https://www.rhizotrial.org/updates/2019/12/8/ethics-approval-for-plasmalogen-sampling-in-rcdp-negative-children monthly 0.5 2020-03-10 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1575844940668-W7X9KGSI9F0IYFXGA6MR/RRPL.png Updates - Ethics approval for plasmalogen sampling in children unaffected by RCDP The Roy Romanow Provincial Laboratory (RRPL) in Regina Saskatchewan. https://www.rhizotrial.org/updates/2019/11/21/rcdp-plasmalogen-therapy-program-updates monthly 0.5 2020-03-10 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1574370545582-LI8PUK1KCNLWWQA0VA3E/QoL+prelim.jpg Updates - RCDP Plasmalogen Therapy Program Updates Results of preliminary quality of life questionnaire testing. The left graph shows the percent of subjects answering the number of times per week to each of the questions, while the right hand plot shows whether their response were less than, equal to, or greater than that of an average or typical week. For example, we can see that the burden on caregivers is high with more than half of the participants answering that they spend more than 5 days a week worrying about hospitalization, getting inadequate sleep, and spending more than 3 hours per day caring for their child. On the other hand, few to none reported that their child aspirated or stopped breathing in the past week. These are preliminary findings of which the results will be used to refine future versions of the survey. https://www.rhizotrial.org/updates/2019/9/5/fda-grants-ppi-1040-orphan-drug-designation monthly 0.5 2019-09-05 https://www.rhizotrial.org/updates/2019/7/24/enrollment-opens-for-rcdp-natural-history-study monthly 0.5 2019-07-26 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1564006494967-QWLXQH91IL7P5KJ6AKQV/AIDHC.jpg Updates - Enrollment opens for RCDP Natural History Study https://www.rhizotrial.org/updates/2019/7/12/qol monthly 0.5 2019-07-19 https://www.rhizotrial.org/updates/2019/7/10/rhizokids-conference-2019 monthly 0.5 2019-07-11 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1562816451239-P7B0A2YDUICT6JAC8MNC/Rhizokids+conference.jpeg Updates - Rhizokids Conference 2019 https://www.rhizotrial.org/updates/2019/5/7/welcoming-vinod-kumar-to-the-mld-team monthly 0.5 2019-05-08 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1557288999706-ULBUMVPF145NRMFPFNO9/vinod.png Updates - Welcoming Vinod Kumar to the MLD team https://www.rhizotrial.org/updates/2019/4/15/mld-onsight-at-alfred-i-dupont monthly 0.5 2019-04-15 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1555369751151-XQXMF2DNY8RJ5HQU1KDE/IMG_2312.JPG Updates - MLD onsight at Alfred I. DuPont Lobby of the Alfred I. DuPont Hospital for Children https://www.rhizotrial.org/updates/2019/2/28/rare-disease-day-2019-rcdp-video-trailer monthly 0.5 2019-02-28 https://www.rhizotrial.org/updates/2019/2/5/fda-meeting-and-other-updates monthly 0.5 2019-02-07 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1549405325292-FB8UT3T3NOKZXXVEH52X/IMG_9699.jpg Updates - FDA meeting and other updates! Shawn, Tara, Dr. Bober and Dr. Carroll at the FDA, Jan 30, 2019 to discuss RCDP and PPI-1040 nonclinical development plan. https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1549405491019-8MNFZYONVRF6Y8Q47FHX/cGMP+Image+MLD.jpg Updates - FDA meeting and other updates! Actual reactor currently being used to synthesize several kilograms of cGMP PPI-1040. https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1549424249819-B4PKEZNKM6LN22HZMKOA/Makenna.jpg Updates - FDA meeting and other updates! Makenna Loyd, wearing the LENA audio recording device. https://www.rhizotrial.org/updates/2018/11/21/fireside-chat monthly 0.5 2018-12-07 https://www.rhizotrial.org/updates/2018/11/16/fall-2018-update monthly 0.5 2018-11-19 https://www.rhizotrial.org/updates/2018/8/15/welcome-to-rhizotrialorg-zc4nn monthly 0.5 2018-09-13 https://www.rhizotrial.org/updates/2018/8/15/welcome-to-rhizotrialorg monthly 0.5 2018-09-13 https://www.rhizotrial.org/plasmalogens daily 0.75 2024-09-26 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534283906146-4H2S4SSRQ08T4N53UNTS/image-asset.jpeg Plasmalogens - PLASMALOGENS https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1527987110081-SQPQIG02HPRA7AJUTAR0/PlsEtn_structure.png Plasmalogens - 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/v1/5ad563a85cfd790758c2f5ec/1527987328572-OKXGQG05GO9B6LF3L6D6/peroxisomes.png Plasmalogens - Make it stand out Mammalian cells stained with fluorescent dyes to highlight the nucleus in red, the cytoskeleton in blue, and peroxisomes in green. https://micro.magnet.fsu.edu/ https://www.rhizotrial.org/natural-history-enrolment daily 0.75 2024-09-25 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534273104856-B63DDETHPGEI0H16UT2F/image-asset.jpeg Natural History - NATURAL HISTORY https://www.rhizotrial.org/about-rcdp daily 0.75 2024-09-26 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534279000730-Z461AQTVR08O4AGRAWQY/Jackson2_original.JPG About RCDP - RHIZOMELIC CHONDRODYSPLASIA PUNCTATA (RCDP) https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1527988001842-8ONGPMJ2LWZEGUR0PUE4/RCDP_xray.png About RCDP X-ray of an RCDP child showing rhizomelia (shortening) of upper long-bones. https://www.rhizotrial.org/partners daily 0.75 2024-09-25 https://www.rhizotrial.org/contact daily 0.75 2018-08-15 https://www.rhizotrial.org/home_grid daily 1.0 2025-02-27 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1525110590525-HG6Z38346UU3WX41E8GG/Jackson2_original.JPG Home - About RCDP Learn about RCDP and the biochemistry. . . https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534194269821-R9N2C0STQPEL7DI7PHPX/image-asset.jpeg Home - Plasmalogens https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534194240159-GRVUBHPU45FQI4COPF60/image-asset.jpeg Home - Natural History Study https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534194998887-5XVMBXZIRKC2KMJFDOSQ/image-asset.jpeg Home - Clinical Development Photo by eclipse_images/iStock / Getty Images https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534447035329-BPZ1IO5N8W6ORH5O0UIK/image-asset.jpeg Home - Resources https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534196143343-Z4D2X6IJ375JC1ZQMQR0/image-asset.jpeg Home - News & Updates Photo by Joe_Potato/iStock / Getty Images https://www.rhizotrial.org/clinicaldevelopment daily 0.75 2024-09-26 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534883676027-ADGQX3XFHX1TFQTQAK4B/image-asset.jpeg Clinical Development - Clinical Development Evaluation of PPI-1011 as a treatment for RCDP https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/4aae9c12-fcaa-461a-8408-54e9c0a34531/PPI-1011+and+peroxisome+pathway.png Clinical Development - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rhizotrial.org/resources daily 0.75 2024-09-25 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534448838384-J72GWSJABZHDKZX3RAQY/image-asset.jpeg Resources - RESOURCES https://www.rhizotrial.org/rhizokids-conference-2018-study daily 0.75 2019-07-12 https://www.rhizotrial.org/get-involved daily 0.75 2024-09-26 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/1534883754129-BNIH4JAJKV1DJMM1CBG2/image-asset.jpeg Participate - GET INVOLVED! Photo by mattjeacock/iStock / Getty Images https://www.rhizotrial.org/pfdd daily 0.75 2025-02-27 https://images.squarespace-cdn.com/content/v1/5ad563a85cfd790758c2f5ec/9170ff76-fc93-4d41-9c82-acb52a03506c/PFDD+Title+slide.png PFDD - 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/v1/5ad563a85cfd790758c2f5ec/10ee4b15-72de-49b0-a8fc-d8e902a2b779/rcdp_child2.jpg PFDD - 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/v1/5ad563a85cfd790758c2f5ec/d3d81276-b9f3-46ff-9521-7569b90ff787/bober.jpg PFDD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rhizotrial.org/vop-report daily 0.75 2025-02-27