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CAPRIN1 Foundation

@caprin1-foundation.bsky.social

Supporting families affected by CAPRIN1-related disorders through research, education and community connection. Connect with us: https://linktr.ee/Caprin1

11 Followers  |  26 Following  |  25 Posts  |  Joined: 30.03.2025
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Posts by CAPRIN1 Foundation (@caprin1-foundation.bsky.social)

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As we get closer to the festive season, consider gifting a donation which will give hope to people with #CAPRIN1 variants.

Your donation powers cutting-edge research, bringing us closer to understanding the gene & developing life changing support.

Every gift matters πŸ™ caprin1foundation.org/donate/

23.12.2025 10:01 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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🧬 Genetic testing can unlock answers about CAPRIN1

If you or a loved one has a suspected CAPRIN1 variant, consider genetic testing which will help researchers move closer to treatments for people worldwide.

Learn more: caprin1foundation.org/participate-...

#GeneticTesting #RareDiseaseResearch

22.12.2025 13:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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CAPRIN1 helps brain cells communicate and develop. When this gene doesn’t work as expected, it can impact language, learning, movement, behavior, and sensory processing.

The more we understand #CAPRIN1, the better we can support those affected.

πŸ’™ Learn more or get involved at caprin1foundation.org

18.12.2025 12:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Can you help us raise vital funds for #CAPRIN1 research?

Our research team needs specialty equipment to continue their work to better understand CAPRIN1 variants & possible treatment.

🌟 Every donation counts: caprin1foundation.org/donate/

#CAPRIN1Awareness #RareDiseaseFunding #Donate

16.12.2025 10:01 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Possible signs of a #CAPRIN1 variant may include:
πŸ—£οΈ Developmental/speech delays
⚑ Unexplained seizures
🧩 Autism-like traits
🧬 Family history of neurological conditions

These signs can have many causes, but learning about CAPRIN1 can help families find clarity.

πŸ’™ Learn more at caprin1foundation.org

14.12.2025 15:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Parents. Adults. Caregivers. Clinicians. Researchers.

No matter your connection to #CAPRIN1, you belong here.
Join the CAPRIN1 Community today: caprin1foundation.org/join-our-com...

#InclusiveCommunity #RareDiseaseSupport #CAPRIN1Foundation

11.12.2025 12:01 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Your involvement today fuels tomorrow’s breakthroughs.

We're passionate about building hope for people with #CAPRIN1 variants and we need you to help us further our efforts! Sign up, donate, or participate β€” together we can create change.

#HopeForRare #CAPRIN1Foundation #RareDiseaseSupport

10.12.2025 10:01 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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CAPRIN1 variants are rare β€” with only 24 reported cases. In order to get vital funding for research we're trying to get as many people possible tested to reflect true prevalence.

🌍 Do you have a confirmed variant? Get in touch: caprin1foundation.org/participate-...

#RareDisease #SupportRare

08.12.2025 11:01 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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CAPRIN1 plays a key role in brain development. Variants in this gene can impact speech, motor skills, behavior, hearing, and more.

Find out more about CAPRIN1 and variants on our website: caprin1foundation.org

#Genetics #Neurodevelopment #CAPRIN1Education

05.12.2025 12:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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CAPRIN1 Foundation was founded by parents who wanted answers, support & connection. If you or someone you love is affected by a CAPRIN1 variant, we're here for you!

Join our supportive community: caprin1foundation.org/join-our-com...

#FamilySupport #CAPRIN1Foundation #RareDisease

03.12.2025 11:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Sharing your journey helps researchers understand how CAPRIN1 affects development, communication and everyday life.

πŸ’™ Join the research community and sign up to participate in a study today: caprin1foundation.org/participate-...

#PatientVoices #ResearchImpact #CAPRIN1Community

01.12.2025 10:01 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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CAPRIN1 plays a key role in brain development. Variants in this gene can impact speech, motor skills, behavior, hearing, and more.

Find out more about #CAPRIN1 and variants on our website: caprin1foundation.org

#Genetics #Neurodevelopment #CAPRIN1Education

28.11.2025 12:01 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Stay up to date on CAPRIN1 research, family stories and new opportunities to get involve by signing up to join our community.

πŸ“¬ Sign up on our website: caprin1foundation.org/join-our-com...

#Newsletter #CAPRIN1Updates #StayConnected

26.11.2025 18:02 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Your donation funds #CAPRIN1 research and awareness efforts worldwide!
πŸ’› Help us accelerate discoveries and bring hope to families by donating today.

πŸ‘‰ Donate at caprin1foundation.org/donate/

#DonateForGood #CAPRIN1Foundation #RareDiseaseAwareness

24.11.2025 10:00 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Every research participant brings us closer to answers families have waited for. If you or your child has a CAPRIN1 variant, we’d love to hear from you.

πŸ”¬ Sign up to participate in research today: caprin1foundation.org/participate-...

#RareDiseaseResearch #CAPRIN1 #ScienceForGood #GeneticResearch

21.11.2025 10:00 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Image of a man placing his hand in a supportive way on another man's shoulder. The text reads "We're here for you!"

Image of a man placing his hand in a supportive way on another man's shoulder. The text reads "We're here for you!"

You are not alone. Join a global network of families, advocates and researchers working to understand CAPRIN1-related conditions.

πŸ’™ Connect, learn and grow with us.

πŸ‘‰ Sign up at caprin1foundation.org/join-our-com...

#CAPRIN1 #RareDiseaseCommunity #Genetics #SupportFamilies #JoinUs

19.11.2025 10:00 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

We'd love to be added! Representing people with #CAPRIN1 variants.

19.11.2025 07:41 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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If your child has been diagnosed with autism, speech delay, or developmental challenges, there could be an underlying genetic reason, like a rare CAPRIN1 mutation. Learn the signs, why it matters, and how genetic testing could give you answers.

26.07.2025 14:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

β€’ Early intervention: Speech/OT therapy, special education β€’ Hearing support: Aids/cochlear implants if required β€’ Routine & communication: Visual schedules, devices (AAC) β€’ Emotional support: Celebrate small wins, advocate for inclusion β€’ Join communities: Support groups, networks can be lifelines

05.07.2025 17:36 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Post image 05.07.2025 17:28 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

CAPRIN1 mutations are rare but can cause CAPRIN1-related neurodevelopmental disorder, affectingβ€’ Learning developmentβ€’ Speechβ€’ Movement/coordinationβ€’ Behaviorβ€’ Hearing, vision or other bodily functions. It’s crucial in early brain development, so a mutation can show effects in childhood or infancy.

07.06.2025 15:46 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

When CAPRIN1 doesn’t work properly, the brain and nervous system might not develop or function normally.
You can think of this gene like an instruction manual. If there’s a mutation (a change or β€œtypo” in the instructions), the body might not make the protein correctly, or at all.

07.06.2025 15:43 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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CAPRIN1 is the name of a gene that helps make a protein important for brain function and communication between brain cells. We’re still learning, hence your voice matters. Share, support, and connectβ€”because awareness is powerful. #CAPRIN1 #RareDiseaseAwareness #GeneticSupport #Neurodevelopment

07.06.2025 15:42 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Our Goals

Spread Awareness And Education
Encourage Genetic Testing
Support Research
Build Community

How You Can Help

Follow & Share: Spread the word
Join Our Foundation: caprin1foundation.org
Engage & Discuss: Participate & share experiences
Consider Genetic Testing: To provide valuable insights

30.03.2025 19:11 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Welcome to Our CAPRIN1 Awareness Page!

CAPRIN1 is a crucial protein that plays a significant role in cellular function and neurological health. Our mission is to raise awareness, share research and build a supportive community for those affected by CAPRIN1-related conditions.

30.03.2025 18:57 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0