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THE CHANDLER PROJECT JOINS GLOBAL GENES RARE-X PROGRAM

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Achondroplasia

#RareDiseaseDay 2019

Out now – new official #RareDiseaseDay video! Watch Filip and Alina’s story. He is from Romania and lives with achondroplasia Share the video to raise awareness of rare diseases for Rare Disease Day 2019. #ShowYourRare

Rare disease day is on February 28!

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Post Tags: #ACHONDROPLASIA #RARE DISEASE DAY

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The Chandler Project

Little legend: Child with rare form of dwarfism begins his biggest adventure yet

We are so excited to share the recent webinar we d

We are so excited to share the recent webinar we did with @picnichealth!

Last month, The Chandler Project partnered with #PicnicHealth for an empowering #achondroplasia community webinar on how to advocate for your child in a medical setting.

Chandler Crews, founder of TCP, and Victoria Garcia, RN, are expert achondroplasia advocates who shared and discussed their experiences advocating at the doctor’s office.

Some of the topics discussed were:
✍️ Tips for advocating for yourself and child in a medical setting
🏥 How medical records can help you advocate for yourself
🔬 Sharing the VISTA study – how you can join and contribute to ACH research from home
🥰 and Resources you can lean into for extra support

Be sure to download the resources that Picnic Health created with Victoria through the 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢! From there, you can also watch the full webinar!

#AchondroplasiaAwareness #AchondroplasiaResearch #TreatingAchondroplasia #FGFR #FGFR3 #Dwarfism #DwarfismAwareness #PatientAdvocacy #PatientAdvocate #PatientSupport #ParentAdvocacy #ParentAdvocate #ParentSupport #Parenting #Caregiver #Healthcare #Empower

“Data collection fosters collaboration between t

“Data collection fosters collaboration between the scientific community, healthcare providers, and individuals and their families, creating a comprehensive network that actively contributes to ongoing research and the continuous improvement of care strategies."
– Dr. Ravi Savarirayan, @murdoch_childrens

𝗧𝗢𝗗𝗔𝗬 is 𝗧𝗛𝗘 𝗗𝗔𝗬! Please join The Chandler Project and @growingstrongerorg later today at 𝟲 𝗣𝗠 𝗘𝗧 for the #Achondroplasia & #SkeletalDysplasia @_rare.x_ Launch Party with @globalgenes and special guest, Dr. Ravi!

You still have plenty of time to 𝗥𝗘𝗚𝗜𝗦𝗧𝗘𝗥 through the 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢!

We hope to see you live at the launch!

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

"Data enhances clinical decision-making and facili

"Data enhances clinical decision-making and facilitates the development of targeted therapies, ultimately improving the quality of life for individuals with achondroplasia."
– Dr. Ravi Savarirayan, @murdoch_childrens

Please join The Chandler Project and @growingstrongerorg 𝗧𝗢𝗠𝗢𝗥𝗥𝗢𝗪, Nov. 30 @ 6 PM ET for the #Achondroplasia & #SkeletalDysplasia @_rare.x_ Launch Party with @globalgenes where members of the community can learn about the importance of data collection and benefits of a data collection program and the value hold when it comes to enhancing clinical decision-making and the development of therapies to improve QoL.

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

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

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