Rare Diseases Clinical Research Network

NIH-funded network fostering collaborative research among 21 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.

[Rare Diseases Clinical Research Network @rarediseasesnet]

Today is International #BattenDisease Awareness Day! 🎉

➡️ Learn more about Batten disease: https://t.co/vCWaAZ8xGV

➡️ Check out our research: https://t.co/pJUQy4GObe

➡️ Get involved with our patient advocacy partner @BDSRA: https://t.co/t0YYY0Cr8d

#ForgetMeKnot

[Rare Diseases Clinical Research Network @rarediseasesnet]

New research from the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN):

✅ Developing a New Patient-Centered Approach to #ClinicalTrialReadiness in #AicardiGoutières Syndrome

Listen and read more: https://t.co/zNB9nD6uQC

[Rare Diseases Clinical Research Network @rarediseasesnet]

Our Advancing Rare Disorders: #VascularMalformation Research Network w/CaNVAS (ARDVARC) team presented at the International Society for the Study of #VascularAnomalies World Congress 2026! Topics included innovation, outcomes & support. More about ARDVARC: https://t.co/5kWv0iQqXP

[Myasthenia Gravis Foundation of America @MyastheniaOrg]

Share for awareness this June. Learn more about myasthenia gravis at https://t.co/zcLsQvaTgN

[Rare Diseases Clinical Research Network @rarediseasesnet]

June is #CavernousMalformation Awareness Month! 🎉

➡️ Learn more about cavernous malformations: https://t.co/eII43h0cE4

➡️ Our research: https://t.co/sv5dZKygbR

➡️ Get involved with our patient advocacy partner Alliance to Cure Cavernous Malformation: https://t.co/eeQyuLxNji

[Myasthenia Gravis Foundation of America @MyastheniaOrg]

Share how you are raising awareness this June! Post a photo of you and your crew in your teal gear, at your fundraiser, or otherwise telling the world about myasthenia gravis. https://t.co/BCJpCPHMKf

[Rare Diseases Clinical Research Network @rarediseasesnet]

🎧 New podcast episodes now available!

Featuring:
✅ #AicardiGoutières Syndrome
✅ #UreaCycleDisorders

Listen and subscribe: https://t.co/0iqJW9VkVR

[Myasthenia Gravis Foundation of America @MyastheniaOrg]

Myasthenia gravis…
*Is a rare, neuromuscular, autoimmune condition
*Causes muscle weakness
*Can make it hard to see, swallow, breathe, and walk
*Can affect anyone, regardless of age, gender, or ethnicity

Learn more at
https://t.co/eR3bIYlZda

[Rare Diseases Clinical Research Network @rarediseasesnet]

New research from the Network for Advancing #SexChromosomeAneuploidy Research Readiness (NASCARR)

✅ Creating a #PatientRegistry to Improve Health Outcomes for Individuals with #SexChromosomeAneuploidies 

Listen and read more: https://t.co/Zlsc898Ugp

[Rare Diseases Clinical Research Network @rarediseasesnet]

New research from the #MyastheniaGravis Rare Disease Network (MGNet):

✅ Investigating the Impact of Demographic Trends on Disease Prognosis in Myasthenia Gravis

Listen and read more: https://t.co/gdKmOc650h

[Rare Diseases Clinical Research Network @rarediseasesnet]

The Batten Disease Clinical Research Consortium has awarded the 2026 Early Career Investigator Grant to Aikaterini Chatzipli, PhD, of @BostonChildrens and @harvardmed, and the 2026 Pilot Project Grant to Ruchira Singh, PhD, of @UR_Med! Learn more: https://t.co/yMhEyd7hCT

[Rare Diseases Clinical Research Network @rarediseasesnet]

New research from The IMPACT Study:

✅ Advancing Treatment in #CongenitalThromboticThrombocytopenicPurpura (#cTTP)

Listen and read more: https://t.co/9XU66SaYN4

[Rare Diseases Clinical Research Network @rarediseasesnet]

🎧 New podcast episodes now available!

Featuring:
✅ #CongenitalThromboticThrombocytopenicPurpura
✅ #MyastheniaGravis
✅ #SexChromosomeAneuploidies
✅ #ATP1A3-Related Disorders
✅ #OrnithineTranscarbamylase (#OTCDeficiency)

Listen and subscribe: https://t.co/0iqJW9VkVR

[Rare Diseases Clinical Research Network @rarediseasesnet]

🚨 New funding opportunities in #MyastheniaGravis from @MGNet__!

💬 Support for myasthenia gravis research and career development

✅ Scholar Program
✅ Pilot Grant Program

Learn more and apply: https://t.co/PK7TpFlFek

[Rare Diseases Clinical Research Network @rarediseasesnet]

New research from the Global #Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN):

✅ Investigating #LanguageSkills in Children with #AlexanderDisease

Listen and read more: https://t.co/RQMLUhp0Gp

[Rare Diseases Clinical Research Network @rarediseasesnet]

🎉 April is National #PrimaryImmunodeficiency Awareness Month!

➡️ Learn more about primary immunodeficiency: https://t.co/nCP087kI4Z

➡️ Check out our research: https://t.co/Cqsl3DWdMe

➡️ Get involved with our patient advocacy partner @immunedeficienC: https://t.co/x1pXqm8WWm

[Rare Diseases Clinical Research Network @rarediseasesnet]

Meet Andrew D. Tran, MD! Dr. Tran is a faculty member @uamshealth & @archildrens. With the Advancing Rare Disorders: #VascularMalformation Research Network with CaNVAS (ARDVARC), his work focuses on using #AI & #MachineLearning to improve patient safety. https://t.co/RGKKQAmlxa

[Rare Diseases Clinical Research Network @rarediseasesnet]

🎉 Today is International #Pompe Day!

➡️ Learn more about #PompeDisease: https://t.co/26HQ38UAWa
➡️ Check out our research: https://t.co/PvOM1bxgKN

[Rare Diseases Clinical Research Network @rarediseasesnet]

"I'm working out the way to cope, counting every dose of hope. I'm trying to be who I want to be, living with a #RareDisease."

The @MGNet__ team created a song about the struggles of living with a rare disease, like #MyastheniaGravis: https://t.co/r9GeuX09Uo

[Rare Diseases Clinical Research Network @rarediseasesnet]

🚨 New funding opportunity!

✅ IMPACT Early Career Immersion Award

➡️ Supporting early career scholars with a 12-month translational or clinical immersion experience in #ThromboticMicroangiopathies (TMAs)

🔗 Learn more and apply: https://t.co/w77cExXNRd