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6TH ANNUAL ACHONDROPLASIA & SKELETAL DYSPLASIA RESEARCH CONFERENCE

ABOUT
- MISSION
- FOUNDER’S STORY
PHARMACHON
- 2024 RESEARCH CONFERENCE
- ’23 PRESENTATION SUMMARIES
COMMUNITY
CONDITIONS
RESEARCH
CONTACT

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When it comes to raising a child with #achondropla

When it comes to raising a child with #achondroplasia or any form of skeletal dysplasia, there are a lot of questions and concerns, and it can become overwhelming. Especially when deciding the best course of action regarding treatments and weighing pros and cons. ⚖️

It’s important to know 𝗲𝘃𝗲𝗿𝘆𝘁𝗵𝗶𝗻𝗴 there is to know when making these decisions. By having access to all of the new research surrounding current and developing pharmaceutical treatments and the advances in surgical treatment (i.e., limb lengthening) in 𝗢𝗡𝗘 𝗣𝗟𝗔𝗖𝗘 and a safe space to discuss these options without any fear of judgment, has helped many families who have attended our annual @achondroplasiaresearch & @skeletaldysplasia Research Conference. 🔬

When you attend #ACHSDRC24 this year, you will be equipped with all the new information surrounding research & developments, and advancements in treatment options for achondroplasia and #hypochondroplasia, all in one place. 📌

To register, tap the 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢!

#AchondroplasiaResearch #FGFR3 #TreatingAchondroplasia #HypochondroplasiaResearch #Dwarfism #DwarfismAwareness #SkeletalDysplasia #PHARMACHON #HereItsDifferent #CNTop5 #GROWUPSTRONGER #HospitalForSpecialSurgery #ICLL #UWMadison #Endocrinology #Genetics #GeneticResearch #LimbLengthening #Vosoritide #VOXZOGO #Infigtratinib #TransConCNP #TYRA300 #SAR442501 #IgnitingPotential

We are excited to announce that scholarships are a

We are excited to announce that scholarships are available for 𝗙𝗜𝗥𝗦𝗧-𝗧𝗜𝗠𝗘 𝗔𝗧𝗧𝗘𝗡𝗗𝗘𝗘𝗦 for this year’s @achondroplasiaresearch and @skeletaldysplasia Research Conference! 🤩

Now is your chance to attend the 𝗢𝗡𝗟𝗬 event in the U.S. that provides YOU with the latest information about research & developments surrounding research studies, clinical trials, pharmaceutical treatments, and surgical advancements for #achondroplasia and #hypochondroplasia directly from the leading researchers and expert physicians. 🩺

𝗘𝗟𝗜𝗚𝗜𝗕𝗜𝗟𝗜𝗧𝗬 & 𝗥𝗘𝗤𝗨𝗜𝗥𝗘𝗠𝗘𝗡𝗧𝗦:
✅ First-time attendee

✅ Must be registered to attend

✅ A parent or caregiver of a child with achondroplasia or hypochondroplasia (students, physicians, and industry professionals are 𝗡𝗢𝗧 eligible to apply)

✅ Live 100+ miles from the conference site (Baltimore, MD)

✅ Write a detailed request expressing your reason for wanting to attend the conference

✅ Must be present on-site at the conference and participate

If selected, when you attend the #ACHSDRC24 this year, YOU will have the opportunity to directly advocate for the specific needs and outcomes you want from R&D regarding treatment options for your child’s condition and more! 🧬

For additional details and to apply, tap the 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢!

🗓️ 𝗗𝗘𝗔𝗗𝗟𝗜𝗡𝗘 𝗧𝗢 𝗔𝗣𝗣𝗟𝗬: May 19, 2024 @ 11 PM ET

#AchondroplasiaResearch #FGFR3 #TreatingAchondroplasia #HypochondroplasiaAwareness #HypochondroplasiaResearch #Dwarfism #DwarfismAwareness #SkeletalDysplasia #ForResearch #ForGrowth

NEW – First clinical trial of #vosoritide for ch

NEW – First clinical trial of #vosoritide for children with #HYPOCHONDROPLASIA shows increased growth.

Vosoritide’s first global phase 2 study showed an average increased growth rate of 1.8 cm per year in children with hypochondroplasia, a genetic cause of short stature in children, according to researchers from @childrensnational

“𝑻𝒉𝒊𝒔 𝒊𝒔 𝒕𝒉𝒆 𝒇𝒊𝒓𝒔𝒕 𝒎𝒆𝒅𝒊𝒄𝒊𝒏𝒆 𝒕𝒉𝒂𝒕 𝒉𝒂𝒔 𝒃𝒆𝒆𝒏 𝒅𝒆𝒗𝒆𝒍𝒐𝒑𝒆𝒅 𝒕𝒐 𝒔𝒑𝒆𝒄𝒊𝒇𝒊𝒄𝒂𝒍𝒍𝒚 𝒕𝒂𝒓𝒈𝒆𝒕 𝒕𝒉𝒆 𝒑𝒂𝒕𝒉𝒘𝒂𝒚 𝒊𝒏𝒗𝒐𝒍𝒗𝒆𝒅 𝒊𝒏 𝒉𝒚𝒑𝒐𝒄𝒉𝒐𝒏𝒅𝒓𝒐𝒑𝒍𝒂𝒔𝒊𝒂,” says Andrew Dauber, M.D., Chief of #Endocrinology at Children’s National. “𝑻𝒉𝒆𝒔𝒆 𝒇𝒊𝒏𝒅𝒊𝒏𝒈𝒔 𝒘𝒊𝒍𝒍 𝒉𝒆𝒍𝒑 𝒊𝒏𝒇𝒐𝒓𝒎 𝒇𝒖𝒕𝒖𝒓𝒆 𝒔𝒕𝒖𝒅𝒊𝒆𝒔 𝒐𝒇 𝒗𝒐𝒔𝒐𝒓𝒊𝒕𝒊𝒅𝒆 𝒇𝒐𝒓 𝒂𝒅𝒅𝒓𝒆𝒔𝒔𝒊𝒏𝒈 𝒈𝒓𝒐𝒘𝒕𝒉 𝒅𝒊𝒔𝒐𝒓𝒅𝒆𝒓𝒔.”

Dr. Dauber will be presenting on Sunday, June 30 at the Achondroplasia & Skeletal Dysplasia Research Conference in Baltimore, Maryland.

To read the press release and register for #ACHSDRC24, click the 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢!

#AchondroplasiaResearch #AchondroplasiaAwareness #TreatingAchondroplasia #HypochondroplasiaResearch #treatingHypochondroplasia #Dwarfism #DwarfismAwareness #SkeletalDysplasia #ForGrowth #ForResearch #CNTop5 #GROWUPSTRONGER

Register 𝗧𝗢𝗗𝗔𝗬 for the 6th Annual A

Register 𝗧𝗢𝗗𝗔𝗬 for the 6th Annual Achondroplasia & Skeletal Dysplasia Research Conference! 🧬🦴🔬

🗓️ Friday, June 28-Sunday, June 30
📍 Baltimore, MD – @royalsonestabaltimore

🫶🏻 Connect with patients, parents and caregivers, physicians, researchers, and pharmaceutical and biotech companies in a safe environment to openly discuss the latest research and developments surrounding pharmaceutical treatment options and advances in surgical treatment options, including limb lengthening for #achondroplasia and other #skeletaldysplasia’s.

⭐️ Featuring presentations from:
#AscendisPharma
@biomarinpharmaceutical
#QEDtherapeutics
@sanofi
#TyraBiosciences
@childrenscolo
@childrensnational
@hspecialsurgery
@limblengthmd
@uwmadison

🆕 THIS YEAR – On Sun., June 30, learn about new research and developments surrounding #HYPOCHONDROPLASIA

Hear from @huddydoingthings about families’ unmet needs and frustrations due to the lack of guidelines for hypochondroplasia care in a clinical setting.

𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢 to register

#ACHSDRC24 #AchondroplasiaResearch #FGFR3 #TreatingAchondroplasia #HypochondroplasiaResearch #Dwarfism #PHARMACHON #HereItsDifferent #CNTop5 #GROWUPSTRONGER #HospitalForSpecialSurgery #ICLL #UWMadison #Endocrinology #Genetics #GeneticResearch #LimbLengthening #Vosoritide #VOXZOGO #Infigtratinib #TransConCNP #TYRA300 #SAR442501 #IgnitingPotential

One of the most beautiful things about #patientadv

One of the most beautiful things about #patientadvocacy is no matter your diagnosis, you’re always going to find a #community that’s so welcoming and has a loud voice, too! 📣

Loved meeting Wes Michael and Pam Cusick from @rarepatientvoice for lunch today in Baltimore — and where the next @achondroplasiaresearch conference will be! June 28-30 at @royalsonestabaltimore (where we were in ‘21!) 🦋

#AchondroplasiaAdvocacy #AchondroplasiaAwareness #AchondroplasiaResearch #FGFR3 #Dwarfism #DwarfismAwareness #SkeletalDysplasia #PatientAdvocate #RarePatient #RarePatientVoice

This is exciiitinggg! 🥳 On the eve of #RareDise

This is exciiitinggg! 🥳 On the eve of #RareDiseaseDay, for the first time EVER, the @whitehouse will be hosting a #RareDisease Forum! 🏛️

This event will bring together people living with rare diseases, their family members and caregivers, physicians and clinical care providers, researchers and administration officials to drive progress against the nearly 10,000 known rare diseases that impact up to 30 million Americans. 🇺🇸

The @chandlerproject is so excited to watch Charlene Son Rigby, CEO of @globalgenes, serve on the policy panel. 🦓

Last year, The Chandler Project joined @_rare.x_, a program of #GlobalGenes to develop the #Achondroplasia and Other Skeletal Dysplasia Data Collection Program to expand and improve medical research. 🔬

By generating the most comprehensive ACH & OSD DCP, we can accelerate research and the development of new drugs, devices, or other therapies. 💊

To join the Achondroplasia and Other #SkeletalDysplasia Data Collection Program, tap the 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗕𝗜𝗢

Be sure to tune to the White House #RareDiseaseForum at 5 PM ET (also linked in bio)

#AchondroplasiaAwareness #AchondroplasiaResearch #FGFR3 #Dwarfism #DwarfismAwareness #Advocacy #PatientAdvocacy #ShowYourStripes #CareAboutRARE #BeCounted #RAREX #RareAdvocacy

The rarest day of the year is this week – Thursd

The rarest day of the year is this week – Thursday, February 29! 🗓️

#RareDiseaseDay is an internationally recognized day and initiative to raise #awareness, generate support, and #advocate for care and treatments for the 300 million people globally, including 1:10 Americans who are living with a rare disease. 🦓

#DYK — more than 90% of rare diseases are still without an FDA-approved treatment. 🧬
In Nov. 2021, the @FDA approved the first drug to improve growth in children with #achondroplasia for children age 5 years and older – @biomarinpharmaceutical’s #VOXZOGO (vosoritide) for injection. Nearly two years later (Oct. 2023), approval for VOXZOGO (#vosoritide) was expanded to treat children with ACH under 5. 💉

With VOXZOGO on the market and other developing pipelines...
🟢 #Infigratinib (QED Therapeutics, BridgeBio)
🔵 #TransConCNP (Ascendis Pharma)
🟠 #TYRA300 (Tyra Biosciences)
🟣 #SAR442501 (@sanofi)

...pretty soon, those with achondroplasia will (potentially) have various pharmaceutical treatment options available that may prevent them from needing extensive surgical interventions to alleviate medical complications associated with ACH. 🧠👂🏻🩻

Did you also know that patients, parents, and caregivers can participate in a data collection program (DCP) to expand and improve medical research? 👀

As we lead up to #RDD2024, make sure you’re following @chandlerproject, @achondroplasiaresearch, @skeletaldysplasia, and @pharmachon to learn how you can be part of the @_rare.x_ Achondroplasia & Other Skeletal Dysplasias DCP in order to accelerate research and the development of new drugs, devices, or other therapies! 📊

#AchondroplasiaAwareness #AchondroplasiaResearch #FGFR3 #Dwarfism #DwarfismAwareness #SkeletalDysplasia #ShareYourColours #ShowYourStripes #LightUpForRare #BeCounted #CareAboutRARE #RAREX

#RareDiseaseDay is right around the corner, but in

#RareDiseaseDay is right around the corner, but in honor of today being #ValentinesDay and since it’s #HeartMonth, this post is dedicated to #hearthealth. 🫀

Due to their short stature, those with #achondroplasia and other #skeletaldysplasia(s) are at a higher risk of increased blood pressure and #heartdisease. ❤️‍🩹

For more information on heart disease and its relationship with achondroplasia and other skeletal dysplasias, check out the following research articles ⸺ 𝗟𝗜𝗡𝗞𝗦 𝗜𝗡 𝗕𝗜𝗢

📄 – Assessment of body fat mass, anthropometric measurement and #cardiometabolic risk in children and adolescents with achondroplasia and #hypochondroplasia

📄 – #Cardiovascular risk factors and body composition in adults with achondroplasia

📄 – Blood pressure in adults with short stature skeletal dysplasias

#AchondroplasiaAwareness
#AchondroplasiaResearch #HypochondroplasiaAwareness #HypochondroplasiaResearch #FGFR3 #Dwarfism #DwarfismAwareness #HeartHealth #RareDiseaseMonth2024 #RareDiseaseMonth #RareDiseases #ShareYourColours #ShowYourStripes #Awareness #LightUpForRare #LeapYear #CareAboutRare #PatientAdvocacy

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ABOUT
- MISSION
- FOUNDER’S STORY
PHARMACHON
- 2024 RESEARCH CONFERENCE
- ’23 PRESENTATION SUMMARIES
COMMUNITY
CONDITIONS
RESEARCH
CONTACT

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