Cure MFM13
@curemfm13.bsky.social
A patent-driven charitable project, united by a common cause: to address the challenges of MFM13
Pinned
Cure MFM13
@curemfm13.bsky.social
· Oct 6
curemfm13.org
Cure MFM13 is the only charitable project dedicated to overcoming challenges of MFM13
buff.ly
Cure HSPB8 is now Cure MFM13! 📢
The disease we focus on has been officially named Myofibrillar Myopathy type 13 with Rimmed Vacuoles (MFM13) in OMIM, and we’re updating our name to reflect that recognition.
🌍 Same mission, stronger identity.
🔗 Learn more:
The disease we focus on has been officially named Myofibrillar Myopathy type 13 with Rimmed Vacuoles (MFM13) in OMIM, and we’re updating our name to reflect that recognition.
🌍 Same mission, stronger identity.
🔗 Learn more:
Huge thanks to @rareatives for featuring our story! 💙
“What started in isolation has become a community — CureMFM13.”
Their article highlights our mission to support patients with MFM13, connect families, and accelerate research.
Read it here:
“What started in isolation has become a community — CureMFM13.”
Their article highlights our mission to support patients with MFM13, connect families, and accelerate research.
Read it here:
CureMFM13: How a Rare Disease Diagnosis Built a Community
Todd fought for years to get a diagnosis. Now, alongside his team at Cure MFM13, he’s working to build a community, advance research, and work towards a world free from MFM 13.
buff.ly
November 26, 2025 at 6:03 PM
Huge thanks to @rareatives for featuring our story! 💙
“What started in isolation has become a community — CureMFM13.”
Their article highlights our mission to support patients with MFM13, connect families, and accelerate research.
Read it here:
“What started in isolation has become a community — CureMFM13.”
Their article highlights our mission to support patients with MFM13, connect families, and accelerate research.
Read it here:
New study by Fu et al. 2025 shows HSPB8 acts as a tumor suppressor in prostate cancer
Low HSPB8 levels promote growth via PI3K–AKT–mTOR signaling.
Read the full article here → 📖 buff.ly/SgGOApa
#HSPB8 #CancerResearch #MFM13
Low HSPB8 levels promote growth via PI3K–AKT–mTOR signaling.
Read the full article here → 📖 buff.ly/SgGOApa
#HSPB8 #CancerResearch #MFM13
Frontiers | Recognition of HSPB8 as a potential therapeutic target for prostate cancer
Prostate cancer poses a serious burden on men’s quality of life. Identifying novel biomarkers for therapeutic development and prognostic prediction has long ...
buff.ly
November 24, 2025 at 6:03 PM
New study by Fu et al. 2025 shows HSPB8 acts as a tumor suppressor in prostate cancer
Low HSPB8 levels promote growth via PI3K–AKT–mTOR signaling.
Read the full article here → 📖 buff.ly/SgGOApa
#HSPB8 #CancerResearch #MFM13
Low HSPB8 levels promote growth via PI3K–AKT–mTOR signaling.
Read the full article here → 📖 buff.ly/SgGOApa
#HSPB8 #CancerResearch #MFM13
New study by Xiaolong Chen et al. reveals new roles for HSPB8 in gallbladder cancer 🧬
HSPB8 was identified among key genes linked to immune protection via tertiary lymphoid structures.
#HSPB8 #MFM13 #HeatShockProteins #CancerResearch
📖
HSPB8 was identified among key genes linked to immune protection via tertiary lymphoid structures.
#HSPB8 #MFM13 #HeatShockProteins #CancerResearch
📖
buff.ly
November 21, 2025 at 6:01 PM
New study by Xiaolong Chen et al. reveals new roles for HSPB8 in gallbladder cancer 🧬
HSPB8 was identified among key genes linked to immune protection via tertiary lymphoid structures.
#HSPB8 #MFM13 #HeatShockProteins #CancerResearch
📖
HSPB8 was identified among key genes linked to immune protection via tertiary lymphoid structures.
#HSPB8 #MFM13 #HeatShockProteins #CancerResearch
📖
Learn how changes to #Medicare, #Medicaid and the #ACA could affect access to affordable health care in @nordrare webinar, “Stay Covered: Open Enrollment Essentials for Rare Disease Families,” Nov. 19 at 2 p.m. ET: bit.ly/4nUYIEm
#OpenEnrollment #RareDisease #RareDiseases #HealthInsurance
#OpenEnrollment #RareDisease #RareDiseases #HealthInsurance
Welcome! You are invited to join a webinar: Stay Covered: Open Enrollment Essentials for Rare Disease Families. After registering, you will receive a confirmation email about joining the webinar.
Health Insurance is changing …are you ready? Join us on November 19 at 2:00PM EST for a webinar to help members of the rare disease community understand what to look for during open enrollment. We…
bit.ly
November 18, 2025 at 1:30 PM
Learn how changes to #Medicare, #Medicaid and the #ACA could affect access to affordable health care in @nordrare webinar, “Stay Covered: Open Enrollment Essentials for Rare Disease Families,” Nov. 19 at 2 p.m. ET: bit.ly/4nUYIEm
#OpenEnrollment #RareDisease #RareDiseases #HealthInsurance
#OpenEnrollment #RareDisease #RareDiseases #HealthInsurance
🧬 New blog post!
Tedesco et al., 2025 reveal 3 new HSPB8 mutations linked to MFM13.
Elongated HSPB8 disrupts the CASA complex, impairing proteostasis.
🔗 Read our full summary: buff.ly/cMr4goI
#HSPB8 #MFM13 #RareDisease #Myopathy #Autophagy #CASAcomplex
Tedesco et al., 2025 reveal 3 new HSPB8 mutations linked to MFM13.
Elongated HSPB8 disrupts the CASA complex, impairing proteostasis.
🔗 Read our full summary: buff.ly/cMr4goI
#HSPB8 #MFM13 #RareDisease #Myopathy #Autophagy #CASAcomplex
curemfm13.org
A important study by Tedesco et al., published on May 2025, that is collaboration of Angelo Poletti and Viriginia Kimonis ' laboratory teams titled “C-terminal HSPB8 frameshift variants define a…
buff.ly
November 14, 2025 at 6:01 PM
🧬 New blog post!
Tedesco et al., 2025 reveal 3 new HSPB8 mutations linked to MFM13.
Elongated HSPB8 disrupts the CASA complex, impairing proteostasis.
🔗 Read our full summary: buff.ly/cMr4goI
#HSPB8 #MFM13 #RareDisease #Myopathy #Autophagy #CASAcomplex
Tedesco et al., 2025 reveal 3 new HSPB8 mutations linked to MFM13.
Elongated HSPB8 disrupts the CASA complex, impairing proteostasis.
🔗 Read our full summary: buff.ly/cMr4goI
#HSPB8 #MFM13 #RareDisease #Myopathy #Autophagy #CASAcomplex
Proud to represent CureMFM13 at the #WODC2025 in Amsterdam 🇳🇱!
We presented our poster CureMFM13: Connecting Patients, Research, and Industry”— sharing how collaboration drives progress for #MFM13 and the rare disease community.
#RareDisease #PatientAdvocacy #GeneTherapy
We presented our poster CureMFM13: Connecting Patients, Research, and Industry”— sharing how collaboration drives progress for #MFM13 and the rare disease community.
#RareDisease #PatientAdvocacy #GeneTherapy
November 11, 2025 at 6:02 PM
Proud to represent CureMFM13 at the #WODC2025 in Amsterdam 🇳🇱!
We presented our poster CureMFM13: Connecting Patients, Research, and Industry”— sharing how collaboration drives progress for #MFM13 and the rare disease community.
#RareDisease #PatientAdvocacy #GeneTherapy
We presented our poster CureMFM13: Connecting Patients, Research, and Industry”— sharing how collaboration drives progress for #MFM13 and the rare disease community.
#RareDisease #PatientAdvocacy #GeneTherapy
Studying HSPB8 or the CASA autophagy complex?
Check out our growing MFM13 Library of research papers & case studies!
🔗 buff.ly/3geLAsI
#MFM13 #Myopathy #HSPB8
Check out our growing MFM13 Library of research papers & case studies!
🔗 buff.ly/3geLAsI
#MFM13 #Myopathy #HSPB8
Library
buff.ly
November 6, 2025 at 6:00 PM
Studying HSPB8 or the CASA autophagy complex?
Check out our growing MFM13 Library of research papers & case studies!
🔗 buff.ly/3geLAsI
#MFM13 #Myopathy #HSPB8
Check out our growing MFM13 Library of research papers & case studies!
🔗 buff.ly/3geLAsI
#MFM13 #Myopathy #HSPB8
🎉 Exciting news!
MSc Veronica Marchesi has been admitted to the PhD program in Pharmacological Biomolecular Sciences, Experimental and Clinical at the University of Milan.
We’re thrilled that she will continue her important work on #MFM13, and can’t wait to see all her future successes!
MSc Veronica Marchesi has been admitted to the PhD program in Pharmacological Biomolecular Sciences, Experimental and Clinical at the University of Milan.
We’re thrilled that she will continue her important work on #MFM13, and can’t wait to see all her future successes!
November 3, 2025 at 6:01 PM
🎉 Exciting news!
MSc Veronica Marchesi has been admitted to the PhD program in Pharmacological Biomolecular Sciences, Experimental and Clinical at the University of Milan.
We’re thrilled that she will continue her important work on #MFM13, and can’t wait to see all her future successes!
MSc Veronica Marchesi has been admitted to the PhD program in Pharmacological Biomolecular Sciences, Experimental and Clinical at the University of Milan.
We’re thrilled that she will continue her important work on #MFM13, and can’t wait to see all her future successes!
Great to see Ania Kordala, from @CureMFM13, at WDAD 2025 by Stop Duchenne
Highlights included:
🧬 Prof. Joel Chamberlain on building a mouse model for FSHD
💡 Prof. Agnieszka Łoboda on H₂S donors improving muscle health in DMD mice
Cross-disease science = progress for all
#DMD #FSHD #RareDisease
Highlights included:
🧬 Prof. Joel Chamberlain on building a mouse model for FSHD
💡 Prof. Agnieszka Łoboda on H₂S donors improving muscle health in DMD mice
Cross-disease science = progress for all
#DMD #FSHD #RareDisease
October 31, 2025 at 5:07 PM
Great to see Ania Kordala, from @CureMFM13, at WDAD 2025 by Stop Duchenne
Highlights included:
🧬 Prof. Joel Chamberlain on building a mouse model for FSHD
💡 Prof. Agnieszka Łoboda on H₂S donors improving muscle health in DMD mice
Cross-disease science = progress for all
#DMD #FSHD #RareDisease
Highlights included:
🧬 Prof. Joel Chamberlain on building a mouse model for FSHD
💡 Prof. Agnieszka Łoboda on H₂S donors improving muscle health in DMD mice
Cross-disease science = progress for all
#DMD #FSHD #RareDisease
Patient data is one of our most powerful tools. Do you know someone affected by #HSPB8 myopathy? Ask them to join our patient registry: buff.ly/ZFXFAGq
#PatientRegistry #MyopathyResearch #PatientAdvocacy #Join-The-Registry
#PatientRegistry #MyopathyResearch #PatientAdvocacy #Join-The-Registry
Join The Registry
By completing the patient registry, you provide invaluable information about the symptoms and progression of MFM13 myopathy, that cannot be obtained otherwise. Data collected is crucial in…
buff.ly
October 28, 2025 at 5:06 PM
Patient data is one of our most powerful tools. Do you know someone affected by #HSPB8 myopathy? Ask them to join our patient registry: buff.ly/ZFXFAGq
#PatientRegistry #MyopathyResearch #PatientAdvocacy #Join-The-Registry
#PatientRegistry #MyopathyResearch #PatientAdvocacy #Join-The-Registry
Reposted by Cure MFM13
The IIMCB and Cure MFM13 are developing a new mouse model 🐭 for MFM13 — an ultra-rare muscle disease caused by a mutation in the HSPB8 gene.
Using CRISPR/Cas9, researchers aim to uncover its biology and pave the way for new therapies 💊💙
See the video: tinyurl.com/3h56t42t
#RareDiseases #MFM13
Using CRISPR/Cas9, researchers aim to uncover its biology and pave the way for new therapies 💊💙
See the video: tinyurl.com/3h56t42t
#RareDiseases #MFM13
October 28, 2025 at 7:09 AM
The IIMCB and Cure MFM13 are developing a new mouse model 🐭 for MFM13 — an ultra-rare muscle disease caused by a mutation in the HSPB8 gene.
Using CRISPR/Cas9, researchers aim to uncover its biology and pave the way for new therapies 💊💙
See the video: tinyurl.com/3h56t42t
#RareDiseases #MFM13
Using CRISPR/Cas9, researchers aim to uncover its biology and pave the way for new therapies 💊💙
See the video: tinyurl.com/3h56t42t
#RareDiseases #MFM13
🌍 Meet Cure MFM13 at the World Orphan Drug Congress 2025 in Amsterdam, 28–29 Oct!
Our poster: “Cure MFM13: Connecting Patients, Research & Industry”
🤝 Looking to connect with researchers, industry, iPSC therapy innovators & advocacy groups.
#WODC25 #MFM13 #RareDisease
Our poster: “Cure MFM13: Connecting Patients, Research & Industry”
🤝 Looking to connect with researchers, industry, iPSC therapy innovators & advocacy groups.
#WODC25 #MFM13 #RareDisease
October 23, 2025 at 5:06 PM
🌍 Meet Cure MFM13 at the World Orphan Drug Congress 2025 in Amsterdam, 28–29 Oct!
Our poster: “Cure MFM13: Connecting Patients, Research & Industry”
🤝 Looking to connect with researchers, industry, iPSC therapy innovators & advocacy groups.
#WODC25 #MFM13 #RareDisease
Our poster: “Cure MFM13: Connecting Patients, Research & Industry”
🤝 Looking to connect with researchers, industry, iPSC therapy innovators & advocacy groups.
#WODC25 #MFM13 #RareDisease
🚨 New Publication!
Du et al. (J. Virology) show that HSPB8/HSPB1 regulate SUMOylation during Japanese encephalitis virus replication.
🧬 Beyond MFM13 + CASA, these chaperones are also play role in host–pathogen interactions.
👉 buff.ly/N1tSkuL
#HSPB8 #Virology
Du et al. (J. Virology) show that HSPB8/HSPB1 regulate SUMOylation during Japanese encephalitis virus replication.
🧬 Beyond MFM13 + CASA, these chaperones are also play role in host–pathogen interactions.
👉 buff.ly/N1tSkuL
#HSPB8 #Virology
ZNF33B facilitates Japanese encephalitis virus replication by controlling HSPB1/8-mediated SUMOylation of nonstructural protein 5 | Journal of Virology
Japanese encephalitis virus (JEV) poses a severe global health threat, yet host factors regulating its replication remain poorly understood. Our study identifies ZNF33B as a critical host protein…
Asmjournals.asm.org
October 20, 2025 at 5:28 PM
🚨 New Publication!
Du et al. (J. Virology) show that HSPB8/HSPB1 regulate SUMOylation during Japanese encephalitis virus replication.
🧬 Beyond MFM13 + CASA, these chaperones are also play role in host–pathogen interactions.
👉 buff.ly/N1tSkuL
#HSPB8 #Virology
Du et al. (J. Virology) show that HSPB8/HSPB1 regulate SUMOylation during Japanese encephalitis virus replication.
🧬 Beyond MFM13 + CASA, these chaperones are also play role in host–pathogen interactions.
👉 buff.ly/N1tSkuL
#HSPB8 #Virology
🧬 KEGG lists HSPB8 (hsa:26353) as a causal gene in:
- Charcot-Marie-Tooth disease
- Myofibrillar myopathies (MFM13)
- Distal hereditary motor neuropathies
Explore more here: buff.ly/BvfUIQ8
#HSPB8 #RareDisease #MFM13
- Charcot-Marie-Tooth disease
- Myofibrillar myopathies (MFM13)
- Distal hereditary motor neuropathies
Explore more here: buff.ly/BvfUIQ8
#HSPB8 #RareDisease #MFM13
October 17, 2025 at 5:05 PM
🧬 KEGG lists HSPB8 (hsa:26353) as a causal gene in:
- Charcot-Marie-Tooth disease
- Myofibrillar myopathies (MFM13)
- Distal hereditary motor neuropathies
Explore more here: buff.ly/BvfUIQ8
#HSPB8 #RareDisease #MFM13
- Charcot-Marie-Tooth disease
- Myofibrillar myopathies (MFM13)
- Distal hereditary motor neuropathies
Explore more here: buff.ly/BvfUIQ8
#HSPB8 #RareDisease #MFM13
Need HSPB8 testing?
We just updated our “Where to Test” section with a new table of labs in US, Canada & Europe offering HSPB8 gene tests – both single gene & panel-based!
🧬 Find testing options here: buff.ly/19sB8Jo
#HSPB8 #MFM13 #GeneticTesting #RareDisease #CureHSPB8
We just updated our “Where to Test” section with a new table of labs in US, Canada & Europe offering HSPB8 gene tests – both single gene & panel-based!
🧬 Find testing options here: buff.ly/19sB8Jo
#HSPB8 #MFM13 #GeneticTesting #RareDisease #CureHSPB8
October 9, 2025 at 5:05 PM
Need HSPB8 testing?
We just updated our “Where to Test” section with a new table of labs in US, Canada & Europe offering HSPB8 gene tests – both single gene & panel-based!
🧬 Find testing options here: buff.ly/19sB8Jo
#HSPB8 #MFM13 #GeneticTesting #RareDisease #CureHSPB8
We just updated our “Where to Test” section with a new table of labs in US, Canada & Europe offering HSPB8 gene tests – both single gene & panel-based!
🧬 Find testing options here: buff.ly/19sB8Jo
#HSPB8 #MFM13 #GeneticTesting #RareDisease #CureHSPB8
Cure HSPB8 is now Cure MFM13! 📢
The disease we focus on has been officially named Myofibrillar Myopathy type 13 with Rimmed Vacuoles (MFM13) in OMIM, and we’re updating our name to reflect that recognition.
🌍 Same mission, stronger identity.
🔗 Learn more:
The disease we focus on has been officially named Myofibrillar Myopathy type 13 with Rimmed Vacuoles (MFM13) in OMIM, and we’re updating our name to reflect that recognition.
🌍 Same mission, stronger identity.
🔗 Learn more:
curemfm13.org
Cure MFM13 is the only charitable project dedicated to overcoming challenges of MFM13
buff.ly
October 6, 2025 at 5:01 PM
Cure HSPB8 is now Cure MFM13! 📢
The disease we focus on has been officially named Myofibrillar Myopathy type 13 with Rimmed Vacuoles (MFM13) in OMIM, and we’re updating our name to reflect that recognition.
🌍 Same mission, stronger identity.
🔗 Learn more:
The disease we focus on has been officially named Myofibrillar Myopathy type 13 with Rimmed Vacuoles (MFM13) in OMIM, and we’re updating our name to reflect that recognition.
🌍 Same mission, stronger identity.
🔗 Learn more:
📢 Zainab Amin et al. (Magnetic Resonance in Chemistry, 2025) show how stressors modulate HSPB8’s monomer–dimer balance.
🧬 Beyond chaperone function, HSPB8 emerges as a therapeutic target in cancer.
👉 link to full article buff.ly/I89i5ue
#HSPB8 #CancerResearch
🧬 Beyond chaperone function, HSPB8 emerges as a therapeutic target in cancer.
👉 link to full article buff.ly/I89i5ue
#HSPB8 #CancerResearch
buff.ly
October 2, 2025 at 5:03 PM
📢 Zainab Amin et al. (Magnetic Resonance in Chemistry, 2025) show how stressors modulate HSPB8’s monomer–dimer balance.
🧬 Beyond chaperone function, HSPB8 emerges as a therapeutic target in cancer.
👉 link to full article buff.ly/I89i5ue
#HSPB8 #CancerResearch
🧬 Beyond chaperone function, HSPB8 emerges as a therapeutic target in cancer.
👉 link to full article buff.ly/I89i5ue
#HSPB8 #CancerResearch
Update from our visit to PORT Łukasiewicz, Wrocław
We joined the meeting; Models of Collaboration between Patient Advocacy Groups and Scientists.
Met inspiring Patient Advocacy groups
Learned from scientists about new research & testing
Left with fresh ideas for future Cure HSPB8
#RareDisease #MFM13
We joined the meeting; Models of Collaboration between Patient Advocacy Groups and Scientists.
Met inspiring Patient Advocacy groups
Learned from scientists about new research & testing
Left with fresh ideas for future Cure HSPB8
#RareDisease #MFM13
September 26, 2025 at 5:02 PM
Update from our visit to PORT Łukasiewicz, Wrocław
We joined the meeting; Models of Collaboration between Patient Advocacy Groups and Scientists.
Met inspiring Patient Advocacy groups
Learned from scientists about new research & testing
Left with fresh ideas for future Cure HSPB8
#RareDisease #MFM13
We joined the meeting; Models of Collaboration between Patient Advocacy Groups and Scientists.
Met inspiring Patient Advocacy groups
Learned from scientists about new research & testing
Left with fresh ideas for future Cure HSPB8
#RareDisease #MFM13
We’re excited to welcome Vânia as our new Bookkeeper! 🎉
With a Master’s in Financial Auditing and 10+ years of experience in accounting, taxes & financial processes, she’ll help Cure HSPB8 advance its mission and create lasting impact.
With a Master’s in Financial Auditing and 10+ years of experience in accounting, taxes & financial processes, she’ll help Cure HSPB8 advance its mission and create lasting impact.
September 18, 2025 at 5:05 PM
We’re excited to welcome Vânia as our new Bookkeeper! 🎉
With a Master’s in Financial Auditing and 10+ years of experience in accounting, taxes & financial processes, she’ll help Cure HSPB8 advance its mission and create lasting impact.
With a Master’s in Financial Auditing and 10+ years of experience in accounting, taxes & financial processes, she’ll help Cure HSPB8 advance its mission and create lasting impact.
We’re thrilled to announce a new collaboration with IIMCB Warsaw 🧬 to develop a mouse model of MFM13. Carrying the HSPB8 mutation that causes C-terminal extension, this model will be key for uncovering disease mechanisms and testing future therapies. #RareDisease #HSPB8 #IIMCB
September 15, 2025 at 5:03 PM
We’re thrilled to announce a new collaboration with IIMCB Warsaw 🧬 to develop a mouse model of MFM13. Carrying the HSPB8 mutation that causes C-terminal extension, this model will be key for uncovering disease mechanisms and testing future therapies. #RareDisease #HSPB8 #IIMCB
Today, Dr. Ania Kordala & Sylwia Szwec represent Cure HSPB8 at PORT Wrocław to discuss models of cooperation between patient orgs & scientists.
🤝 Collaboration = stronger advocacy for #MFM13 patients.
#RareDisease #PatientAdvocacy #HSPB8
🤝 Collaboration = stronger advocacy for #MFM13 patients.
#RareDisease #PatientAdvocacy #HSPB8
September 12, 2025 at 5:05 PM
Today, Dr. Ania Kordala & Sylwia Szwec represent Cure HSPB8 at PORT Wrocław to discuss models of cooperation between patient orgs & scientists.
🤝 Collaboration = stronger advocacy for #MFM13 patients.
#RareDisease #PatientAdvocacy #HSPB8
🤝 Collaboration = stronger advocacy for #MFM13 patients.
#RareDisease #PatientAdvocacy #HSPB8
🧪 What does MFM13 look like?
• Muscle weakness (arms, legs, hands)
• Trouble walking or climbing stairs
• Cramps, fatigue
• In some: breathing problems
🔗 Learn more buff.ly/bToH6HF
#MFM13 #HSPB8 #RareDisease #MuscleWeakness #Myopathy
• Muscle weakness (arms, legs, hands)
• Trouble walking or climbing stairs
• Cramps, fatigue
• In some: breathing problems
🔗 Learn more buff.ly/bToH6HF
#MFM13 #HSPB8 #RareDisease #MuscleWeakness #Myopathy
HSPB8 Myopathy
Explore detailed clinical insights on HSPB8 Myopathy, a progressive condition affecting adults in their 20s to 40s. Learn about key symptoms, genetic testing, disease management, histological…
buff.ly
September 9, 2025 at 5:02 PM
🧪 What does MFM13 look like?
• Muscle weakness (arms, legs, hands)
• Trouble walking or climbing stairs
• Cramps, fatigue
• In some: breathing problems
🔗 Learn more buff.ly/bToH6HF
#MFM13 #HSPB8 #RareDisease #MuscleWeakness #Myopathy
• Muscle weakness (arms, legs, hands)
• Trouble walking or climbing stairs
• Cramps, fatigue
• In some: breathing problems
🔗 Learn more buff.ly/bToH6HF
#MFM13 #HSPB8 #RareDisease #MuscleWeakness #Myopathy
Since the first HSPB8 case (Ghaoui 2016), 8 more reports on #MFM13 have been published.
🧬 They show shared traits & differences across patients—supporting diagnosis, research & disease insight. Full list on our FB & LinkedIn. #RareDisease #Genetics #Neuromuscular
🧬 They show shared traits & differences across patients—supporting diagnosis, research & disease insight. Full list on our FB & LinkedIn. #RareDisease #Genetics #Neuromuscular
September 4, 2025 at 5:04 PM
Since the first HSPB8 case (Ghaoui 2016), 8 more reports on #MFM13 have been published.
🧬 They show shared traits & differences across patients—supporting diagnosis, research & disease insight. Full list on our FB & LinkedIn. #RareDisease #Genetics #Neuromuscular
🧬 They show shared traits & differences across patients—supporting diagnosis, research & disease insight. Full list on our FB & LinkedIn. #RareDisease #Genetics #Neuromuscular
🧬 Help turn rare into cured.
Get the latest on HSPB8 research, treatments & patient voices in the Cure HSPB8 newsletter.
Join the movement 👉 curehspb8.org
#CureHSPB8 #RareDisease
Get the latest on HSPB8 research, treatments & patient voices in the Cure HSPB8 newsletter.
Join the movement 👉 curehspb8.org
#CureHSPB8 #RareDisease
September 1, 2025 at 5:05 PM
🧬 Help turn rare into cured.
Get the latest on HSPB8 research, treatments & patient voices in the Cure HSPB8 newsletter.
Join the movement 👉 curehspb8.org
#CureHSPB8 #RareDisease
Get the latest on HSPB8 research, treatments & patient voices in the Cure HSPB8 newsletter.
Join the movement 👉 curehspb8.org
#CureHSPB8 #RareDisease