Celebrating Rare Disease Month: You Might Be Surprised that Spina Bifida Is Considered a Rare Disease News about MSI Press authors; Excerpts from MSI Press authors' books; Carl's Cancer Compendium information; tips for authors

Celebrating #RareDiseaseMonth: You might be surprised to learn that #spinabifida is considered a #raredisease

msipressblog.blogspot.com/2026/02/cele...

#myelocele #meningeocele #meningemyelocele #paralysis #hydrocephalus #ArnoldChiariMalformation #epilepsy

💜💙💚 Celebrating Rare Disease Day — February 28 News about MSI Press authors; Excerpts from MSI Press authors' books; Carl's Cancer Compendium information; tips for authors

Celebrating Rare Disease Month

msipressblog.blogspot.com/2026/02/cele...

#RareDiseaseMonth

DNA Today Discover New Advances in the world of genetics, from technology like CRISPR to rare diseases to new research. For over a decade, multi-award winning podcast "DNA Today" has brought you the voices of…

300 million people worldwide live with a #raredisease. That's roughly the entire US population. 🤯

This #RareDiseaseMonth, we're spotlighting the science, stories and hope on our #genetics podcast:

#PacBio is proud to join the International Rare Diseases Research Consortium (IRDiRC)!

We’re joining forces with global stakeholders to advance rare disease research and equitable genomic discovery. Together, we move forward.

Details: bit.ly/4b8PqkW

#WeCareForRare #RareDisease #RareDiseaseMonth

"As we recognize #RareDiseaseMonth this February and #RareDiseaseDay on February 28, I confirm my own, and the entire AASLD membership’s, commitment to the rare liver disease community."

View the letter: https://bit.ly/4aCqQZE

In recognition of #RareDiseaseMonth, check out this special Rare Liver Disease collection from #AASLD publications. These articles highlight clinical expertise and innovation to accelerate discovery where it's needed most.

👉 https://bit.ly/4rFiAOG

Celebrating Rare Disease Month: Bet You’ve Probably Never Heard of OEIS Complex! News about MSI Press authors; Excerpts from MSI Press authors' books; Carl's Cancer Compendium information; tips for authors

Celebrating #RareDiseaseMonth: Bet you have never heard of #OEISComplex

msipressblog.blogspot.com/2026/02/cele...

#raredisease #spinabifida #midlineanomalies #omphalocele

Pulmonary arterial hypertension in MSMDS

Pulmonary arterial hypertension (PAH) is a common early diagnosis in MSMDS, often identified around PDA or APW repair after birth. PAH is also a rare disease (1–9/100,000). #RareDiseaseMonth #ACTA2

Katie Runs for Rare & Rural I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…

Support Research Season & stories like Gerald’s:
🔗 teamtelomere.networkforgood.com/projects/294...

#26for26 #TeamTelomere #RareDiseaseMonth #ResearchSeason #DyskeratosisCongenita #HopeThroughResearch 💜🩷💚

Celebrating Rare Disease Month: Bet You’ve Never Heard of CHARGE Syndrome! News about MSI Press authors; Excerpts from MSI Press authors' books; Carl's Cancer Compendium information; tips for authors

Celebrating #RareDiseaseMonth: Bet you never heard of #CHARGESyndrome!

msipressblog.blogspot.com/2026/02/cele...

#deafblind #coloboma #DisabilityAwareness #CaregiverVoices #caregiving

For #RareDiseaseMonth, we’re spotlighting innovation at Cold Spring Harbor Laboratory.

CSHL Professor Adrian Krainer — who helped develop Spinraza — is now advancing ASO technology to help Cystic Fibrosis cells produce functional CFTR protein, paving the way for more personalized treatments.

#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth #TelomereBiologyDisorders #DyskeratosisCongenita #HopeThroughResearch #PatientAdvocacy #ResearchMatters #RareButNotAlone

The PacBio mission is about more than the technology we build. It’s about showing up for families.

For Rare Disease Month, we assembled 100 care packages for There With Care to support those facing critical illness and medical crises.

We are proud to show #WeCareForRare.

#RareDiseaseMonth

#26for26 #TeamTelomere #TelomereBiologyDisorders #DyskeratosisCongenita #RareDiseaseMonth #ResearchSeason #RareDiseaseCommunity #RareDiseaseResearch

Katie Runs for Rare & Rural I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…

Link to donate: teamtelomere.networkforgood.com/projects/294...

#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth #TelomereBiologyDisorders #RareDiseaseResearch #LegacyThroughResearch #HopeThroughScience #AdvocacyInAction #ResearchMatters #Bereavement #TransformationalResearch #Liver #BMF

Defying Early Prognosis, Texas Man Now Advocates for Others With Sickle Cell Disease Doctors didn't expect Golie-Lorenzo Green, now 45 years old, to reach his 5th birthday

Golie-Lorenzo Green shares his personal experiences of this 'complex and devastating condition' with the goal of advancing public understanding, compassion, and treatment discovery of #SickleCellDisease.

Read here: https://bit.ly/4r73YXS

#RareDiseaseMonth #RareDisease

“The diagnosis part of the journey was probably for me the most difficult.” Tim lives with myelin oligodendrocyte glycoprotein antibody-associated disease, a #rare autoimmune disorder that affects his central nervous system. Like many others living with #MOGAD, Tim experienced a difficult... “The diagnosis part of the journey was probably for me the most difficult.” Tim lives with myelin oligodendrocyte glycoprotein antibody-associated disease, a #rare autoimmune disorder that affects...

During #RareDiseaseMonth, we're sharing this video created by UCB with Timothy Van Rooy, one of our volunteers and MOGAD community members.

Watch this brief, yet powerful video of Tim raising awareness about MOGAD through his diagnosis story: https://www.facebook.com/reel/1935721571154090

Katie Runs for Rare & Rural I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…

💜 You can honor community members like Jeni by supporting Research Season, through learning, advocacy, and investing in the research that creates brighter days.

💜🩷💚

Link to donate: teamtelomere.networkforgood.com/projects/294...

#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth

Vasculitis Foundation Opens First-Ever Registry for Pediatric Rheumatology Patients The Vasculitis Foundation opened the first international Pediatric Vasculitis Registry (PedsVPPRN) in October 2025.

The Vasculitis Foundation opened the first international Pediatric Vasculitis Registry (PedsVPPRN) in October 2025.

Read the full feature: https://bit.ly/4cikjEC

#RareDiseaseMonth #RareDisease #Vasculitis #Rheumatology

Meet Elfride De Baere, Head of Clinic at Ghent University Hospital’s Center for Medical Genetics. She shares why PacBio long-read sequencing + a multiomic approach (genomics + transcriptomics) can help deliver clearer insights for families.

#WeCareForRare #RareDiseaseMonth #GeneticEyeDisease

February is Rare Disease Month 💜

Rare doesn’t mean alone.
Rare doesn’t mean invisible.

Here’s to awareness, advocacy, and community. #RareDiseaseMonth #RareButNotAlone

Katie Runs for Rare & Rural I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…

💜 You can support individuals like Aidan by following Research Season, learning more about telomere biology disorders, or donating to advance research and care.

💜🩷💚

Link to donate: teamtelomere.networkforgood.com/projects/294...

#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth

Katie Runs for Rare & Rural I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…

💜🩷💚

Link to donate: teamtelomere.networkforgood.com/projects/294...

#26for26 #TeamTelomere #ResearchSeason #TelomereBiologyDisorders #RareDiseaseResearch #RareDiseaseMonth #AdvocacyInAction #DyskeratosisCongenita #BMF #Liver #PF #HopeThroughResearch #ResearchMatters

Katie Runs for Rare & Rural I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…

💜🩷💚

Link to donate: teamtelomere.networkforgood.com/projects/294...

#26for26 #RareDiseaseMonth #TeamTelomere #TelomereBiologyDisorders #ResearchSeason #RareDiseaseMonth #RareDisease #DyskeratosisCongenita #TelomereBiologyDisorders #BMF #Liver #PF #HopeThroughResearch #AdvocacyInAction

Rare Diseases, Real Stories Rare Diseases, Real Stories

February is Rare Disease Month. The Rare Diseases, Real Stories podcast series spotlights families affected by rare diseases. Listen here: direc.to/oUKe

#RareDiseaseMonth #RareDisease #RareDiseases #RareDiseasesRealStories #podcast #GeneTherapy @courageousparentsnetwork.org @uofmass.bsky.social 🎧

💙 February is Rare Disease Month — a time to come together, raise awareness, and amplify the voices of those living with rare conditions.

#RareDiseaseMonth #RareDiseaseDay #Bionews #RareVoices #RareCommunity

💙 February is Rare Disease Month — a time to come together, raise awareness, and amplify the voices of those living with rare conditions.

#RareDiseaseMonth #RareDiseaseDay #Bionews #RareVoices #RareCommunity

Katie Runs for Rare & Rural I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…

Link to donate: teamtelomere.networkforgood.com/projects/294...

#TeamTelomere #26for26 #ResearchSeason #RareDiseaseMonth #RareDisease #DyskeratosisCongenita #TelomereBiologyDisorders #PulmonaryFibrosis #LungTransplant #HopeThroughResearch #AdvocacyInAction #ResearchMatters

UMass Chan licenses gene therapy for rare genetic disorder to Raiden Science Foundation UMass Chan has licensed an adeno-associated virus gene therapy to the Raiden Science Foundation to develop a clinical treatment for UBA5 disorder.

UMass Chan and the Raiden Science Foundation have partnered on a technology license for a gene therapy product targeting the ultra-rare disease UBA5: direc.to/oUPW

The foundation is named after 5-year-old Raiden Pham, diagnosed with UBA5 disorder in 2021. #GeneTherapy #RareDisease #RareDiseaseMonth

February is Rare Disease Month. 400 million people globally live with rare diseases. Most face diagnostic delays, limited treatments, and isolation. We partner with the SRNA to change that.

Check out SRNA's podcast: https://ow.ly/ARYY50YbYm4

#RareDiseaseMonth #SRNA #SmartPatients