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THE CHANDLER PROJECT JOINS GLOBAL GENES RARE-X PROGRAM

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1-Anil Bhave

Advocating for Research & Supporting Change – in

Advocating for Research & Supporting Change – in the spirit of #GivingTuesday, please consider making a contribution to The Chandler Project 🦋

Through #advocacy, The Chandler Project brings #awareness and shines a light on research surrounding #achondroplasia and other skeletal dysplasias by offering support to a global community and network of patients, parents, and caregivers seeking information and resources on scientific breakthroughs and treatments for those affected.

Living or caring for someone with a lifelong healthcare condition can sometimes feel very isolating and trapped inside a dark cocoon. Not everyone seeks change, but for those who do, The Chandler Project provides a safe sanctuary to spread their wings, fly, and find the lights to guide them on their own or loved one's healthcare journey.

Your contributions support groundbreaking research, provide resources, and bring hope to individuals and families affected by achondroplasia & skeletal dysplasia.

Together, let's pave the way for a future of understanding, support, and progress for change & hope for those who seek it.

Contributions also go towards helping with the helping the costs of attendance fees for patients, parents, caregivers, and families who attend our annual conference.

Thank you! 💜

#AchondroplasiaResearch #AchondroplasiaAwareness #TreatingAchondroplasia #HopeforAchondroplasia #FGFR3 #Dwarfism #DwarfismAwareness #SkeletalDysplasia #PharmACHON #PatientAdvocacy #PatientAdvocate #ResearchAdvocate #SupportingChange

“With systematic gathering and analysis of data,

“With systematic gathering and analysis of data, researchers gain valuable insights into the natural progression of achondroplasia, allowing for the identification of patterns, potential complications, and personalized treatment approaches."
– Dr. Ravi Savarirayan, @murdoch_childrens

Please join The Chandler Project and @growingstrongerorg on Thursday, Nov. 30 @ 6 PM ET for the #Achondroplasia & #SkeletalDysplasia @_rare.x_ Launch Party where members of the community can learn about the importance of data collection and benefits of a data collection program and the value they offer to researchers.

We are honored to have world-renowned researcher Dr. Ravi joining us at the launch! Please 𝗥𝗘𝗚𝗜𝗦𝗧𝗘𝗥 𝗧𝗢𝗗𝗔𝗬 through 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢!

#BeCounted #CareAboutRare #OwnIt #GlobalGenes #PatientAdvocacy #PatientAdvocate #PatientData #AchondroplasiaAwareness #AchondroplasiaResearch #TreatingAchondroplasia #FGFR #FGFR3 #Dwarfism #DwarfismAwareness #DataCollection #Accelerate #ResearchandDevelopment #MCRI #MurdochChildrens #ChildHealth #ClinicalGeneticist #SkeletalBiology #RareDisease

“Data collection for individuals with achondropl

“Data collection for individuals with achondroplasia, and other skeletal dysplasia, serves as a foundational tool in advancing medical understanding and treatment options.”
– Dr. Ravi Savarirayan, @murdoch_childrens

Please join The Chandler Project and @growingstrongerorg this week, Thursday, November 30 @ 6 PM ET, for the #Achondroplasia & #SkeletalDysplasia @_rare.x_ Launch Party where members of the community can learn about the importance of data collection and benefits of a data collection program.

We are honored to have Dr. Ravi joining us! Please 𝗥𝗘𝗚𝗜𝗦𝗧𝗘𝗥 𝗧𝗢𝗗𝗔𝗬 through 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢!

#BeCounted #CareAboutRare #OwnIt #GlobalGenes #PatientAdvocacy #PatientAdvocate #PatientData #AchondroplasiaAwareness #AchondroplasiaResearch #TreatingAchondroplasia #FGFR #FGFR3 #Dwarfism #DwarfismAwareness #DataCollection #Accelerate #ResearchandDevelopment #MCRI #MurdochChildrens #ChildHealth #ClinicalGeneticist #SkeletalBiology #RareDisease

via @murdoch_childrens • Victoria, Australia 🇦🇺

Drug may reduce SIDS in children with #achondroplasia

A drug that boosts bone growth in children with achondroplasia may also reduce their chances of sudden infant death syndrome (#SIDS), sleep apnoea and needing surgery, according to a new study.

The international research trial, led by Murdoch Children’s Research Institute (MCRI) and published in @thelancetgroup Child & Adolescent Health, has showed for the first time that #vosoritide treatment increases height, facial volume and the size of the #foramenmagnum, the hole at the base of the skull that connects the brain with the spinal cord, in children under five with achondroplasia.

#MCRI is the largest vosoritide clinical trial site in the world and is led by Professor Ravi Savarirayan whose research team has previously shown how the drug improves bone growth development in patients, aged between 5-18 years, with achondroplasia. This latest study found the drug produces similar results in children and infants as young as four months.

𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢 to full article

#AchondroplasiaResearch #AchondroplasiaAwareness #TreatingAchondroplasia #FGFR3 #Dwarfism #DwarfismAwareness #SkeletalDysplasia #PharmACHON #TheLancet #ChildHealth #MurdochChildrens #MCRI #SuddenInfantDeath

via @thelancetgroup Child & Adolescent Health •

via @thelancetgroup Child & Adolescent Health • Nov. 17, 2023 – #Vosoritide therapy in children with #achondroplasia aged 3−59 months: a multinational, randomised, double-blind, placebo-controlled, phase 2 trial

Swipe through carousel for background, methods, findings, and interpretation or access via 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢

Authors 📝:
Prof Ravi Savarirayan, MD • @murdoch_childrens,
Prof William R Wilcox, MD • @emorymedschool,
Prof Paul Harmatz, MD • @ucsfchildrens,
John Phillips III, MD • @vanderbiltu Medical Center,
Lynda E Polgreen, MD • @thelundquistinstitute at @harbor_ucla,
Louise Tofts, MBBS • Kids Rehab @westmeadkids,
Prof Keiichi Ozono, MD • @osakauniversity Hospital,
Paul Arundel, MBBS • @sheffieldchildrens,
Melita Irving, MD • Guy's and St Thomas’ nhs Foundation Trust, Evelina Children's Hospital,
Prof Carlos A Bacino, MD • @bcmhouston,
Donald Basel, MBChB • @medicalcollegeofwi,
Prof Michael B Bober, MD • @nemours,
Prof Joel Charrow, MD • @luriechildrens,
Hiroshi Mochizuki, MD • Saitama Children's Hospital,
Yumiko Kotani, MD • @tokushima_univ Hospital,
Howard M Saal, MD • @cincychildrens @cincinnaticollegeofmedicine,
@biomarinpharmaceutical • California, USA, London, UK

#AchondroplasiaResearch #AchondroplasiaAwareness #TreatingAchondroplasia #FGFR3 #Dwarfism #DwarfismAwareness #SkeletalDysplasia #PharmACHON #TheLancet #ChildHealth #MurdochChildrens #MCRI #Emory #UCSFKids #VandyMed #UCLA #WestMeadKids #OsakaUniversity #SheffieldChildrens #NHS #Baylor #MCWKnowledge #WellBeyondMedicine #All4Your1 #UCCOM #Voxzogo

via #VISENPharmaceuticals • Shanghai, China 🇨

via #VISENPharmaceuticals • Shanghai, China 🇨🇳

Once-Weekly #TransCon™️ CNP Achieved Primary Efficacy Objective in AComplisH China Phase 2 Trial

VISEN Pharmaceuticals (#VISEN), an innovative biopharmaceutical company focused on endocrine diseases, is pleased to announce the topline results from the ACcomplisH China Phase 2 Trial in children with achondroplasia (ACH) aged 2 to 10 years. In the trial, patients dosed with #TransConCNP at the 100 μg CNP/kg/week showed significantly higher annualized growth velocity (AGV) than placebo (1.180 cm/year, P=0.018) at Week 52.

𝙇𝙄𝙉𝙆 𝙄𝙉 𝘽𝙄𝙊 to full press release

#AchondroplasiaResearch #AchondroplasiaAwareness #TreatingAchondroplasia #Acondroplasia #FGFR #FGFR3 #CNP #Dwarfism #DawrfismAwareness #SkeletalDysplasia #PharmACHON #AscendisPharma #Ascendis #AccomplishTrial #TransCon #ACHieve #ACHieveStudy #ShanghaiJiaoTongUniversity #SchoolofMedicine #XinhuaHospital

ICYMI: in the last post it was announced that TCP

ICYMI: in the last post it was announced that TCP is launching an #achondroplasia and skeletal dysplasia data collection program with @_rare.x_, a @globalgenes program 🧬

Please join us on 𝗧𝗛𝗨𝗥𝗦𝗗𝗔𝗬, 𝗡𝗢𝗩𝗘𝗠𝗕𝗘𝗥 𝟯𝟬 at 𝟲 𝗣𝗠 𝗘𝗧 along with @growingstrongerorg for the Achondroplasia & #SkeletalDysplasia Rare-X Launch Party with special guest Professor Ravi Savarirayan from @murdoch_childrens 🇦🇺

We are so excited to be participating in this program and hope that members of the achondroplasia and skeletal dysplasia community will join! 🎉

Benefits of the program include:
✏️ Informing researchers how ACH and SD change over time
📊 Enable better data to use in clinical trials
🔍 Give patients the opportunity to participate in clinical trials
⏰ Reduce the time it takes to study new medicines
⏩ Speed up the time to get treatments to patients
💻 Enable the use of data as a placebo (instead of actual patients) in a clinical trial

𝗥𝗘𝗚𝗜𝗦𝗧𝗘𝗥 𝗧𝗢𝗗𝗔𝗬 through 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢!

#BeCounted #CareAboutRare #OwnIt #GlobalGenes #PatientAdvocacy #PatientAdvocate #PatientData #AchondroplasiaAwareness #AchondroplasiaResearch #TreatingAchondroplasia #FGFR #FGFR3 #Dwarfism #DwarfismAwareness #DataCollection #Accelerate #ResearchandDevelopment #MCRI #MurdochChildrens #ChildHealth #ClinicalGeneticist #SkeletalBiology #RareDisease

So excited to announce that TCP is partnering with

So excited to announce that TCP is partnering with @_rare.x_, a @globalgenes program, to build a Data Collection Program (DCP) for the #achondroplasia and skeletal dysplasia community! 🎉

#RareX focuses on accelerating rare disease research, treatments, and cures by removing barriers for data collection.

When you participate in this program, you’ll help accelerate research and the development of new drugs, devices, and other therapies.

On 𝗧𝗛𝗨𝗥𝗦𝗗𝗔𝗬, 𝗡𝗢𝗩𝗘𝗠𝗕𝗘𝗥 𝟯𝟬 at 𝟲 𝗣𝗠 𝗘𝗧, we are hosting a launch party with members of the Rare-X team and @growingstrongerorg, who is also part of the achondroplasia and skeletal dysplasia DCP – which you can register for now through the 𝗟 𝗜 𝗡 𝗞 𝗜 𝗡 𝗕 𝗜 𝗢 ! We may also have a surprise guest…👀🇦🇺

During the launch party, you will get to learn more about Rare-X and the benefits of the DCP. If you have any questions, please comment them down below!

#BeCounted #CareAboutRare #OwnIt #GlobalGenes #PatientAdvocacy #PatientAdvocate #PatientData #AchondroplasiaAwareness #AchondroplasiaResearch #TreatingAchondroplasia #FGFR #FGFR3 #Dwarfism #DwarfismAwareness #SkeletalDysplasia #DataCollection #Accelerate #ResearchandDevelopment

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