#RETINITISPIGMENTOSA
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hspmauli.bsky.social
Gibt es hier in #BlueSky eigentlich noch andere Deutschsprachige die wie ich, Retinitis Pigmentosa haben?

#Augenkrankheit #Blindheit #RetinitisPigmentosa #Teilen #Followerpower
September 25, 2026 at 3:29 PM
jennand2crows.bsky.social
#retinitispigmentosa
November 17, 2024 at 3:50 AM
gilbertwooferson.bsky.social
RP means my lady sees in a small tunnel. When I want her lunch, I've learned to sit inside of her tunnel of food. #LowVisionAwarenessMonth #retinitisPigmentosa
On a table is a sandwich, chips, and a drink. Directly across, you see me in the background looking at her.
February 4, 2026 at 11:40 PM
hunteress.eurosky.social
#RetinitisPigmentosa #Erfahrungsaustausch
lupine-diewoelfin.bsky.social Lupine @lupine-diewoelfin.bsky.social · Sep 3
Auftragspost:

Retinitis Pigmentosa ist eine seltene Krankheit die meist vererbt wird.

Es haben sich bisher 3 Betroffene zum Erfahrungsaustausch in einer Threema-Gruppe zusammen gefunden und suchen weitere Betroffene.

Bei interesse bitte DM für weitere Infos.

Gerne verbreiten.

Danke.
September 3, 2026 at 5:07 PM
zompjam.bsky.social
Jam's 6 months into crocheting, from Woobles kits to pattern testing for creators 🧶

She has retinitis pigmentosa, which is turning her blind. Bright yarn is easier, dark yarn difficult. But she feels each stitch by hand.

Still fast with a hook.

#broughttolifebyJam

#crochet #RetinitisPigmentosa
October 2, 2026 at 6:39 AM
bendyblindblonde.bsky.social
Heyyyyyy blue sky. Monica here. #VisuallyImpaired #RetinitisPigmentosa #UsherSyndrome
January 20, 2025 at 2:44 AM
rpimpactinitiative.bsky.social
Our goal is to raise more money for scientific research into Retinitis Pigmentosa. We explain the condition and the research through social media. Before asking for donations, we will verify where the money goes and how it funds RP research. #RetinitisPigmentosa
October 2, 2026 at 4:31 PM
foggymac.bsky.social
Uisdean (oo-sh-jun) is a retired fisherman from Ullapool he knows Seumas from the fishing boats, but their friendship cemented through their love of music. They still play at ceilidhs sometimes together. #felting #crafts #Retinitispigmentosa
November 25, 2024 at 2:47 PM
juliebwriter.bsky.social
This account posts in English, Catalan, and Spanish, and this video is in English. #RP #retinitispigmentosa
ibecbarcelona.eu IBEC | Institute for Bioengineering of Catalonia @ibecbarcelona.eu · Mar 5
✨ #Drug4Sight at #4YFN at #MWC2026

Drug4Sight is developing light-regulated drugs to restore vision in patients with retinal degenerative diseases such as retinitis pigmentosa.

🎥 Aslı Raman and Rosalba Sortino explain the project 👇
April 3, 2026 at 6:38 PM
foggymac.bsky.social
My all-time favourite actor #JamesGarner
by my good friend Doreen, who made my rats in pants collection, too. She is partially sighted and such a talented person!
#crafts #pyrography #feltart #retinitispigmentosa #chronicillness
December 23, 2024 at 2:39 AM
rpimpactinitiative.bsky.social
Retinitis Pigmentosa has different genetic causes. A promising treatment for one cause is not automatically suitable for everyone with RP.
www.oogvereniging.nl/oogziekte/re...
#RetinitisPigmentosa #EyeResearch
RP Impact Initiative graphic. One diagnosis. Many genetic causes. A promising treatment for one genetic cause is not automatically a treatment for every form of RP.
September 30, 2026 at 4:30 PM
coinfurytv.bsky.social
Stressful Shots! | #CoinFuryTV on #Twitch #StardewValley #BlindGamer #RetinitisPigmentosa
December 12, 2025 at 4:45 PM
juliebwriter.bsky.social
#langsky #rp #retinitispigmentosa #blindsky #ushers
This book looks amazing!
lawrenceschimel.bsky.social Lawrence Schimel @lawrenceschimel.bsky.social · Apr 27
The new inclusive editions of my #rainbowfamilies children's books have just launched at the Bogotá Book Fair, with #braille & pictograms.
🥰🥰

At the publisher's stand they have a magnetic board where kids can order the pictograms to match the text.
🥰🥰

#kidlit #booksky #scbwi #queerkidlit #lgbtq
A photo of the stand for Dado Editorial Sensorial at the FILBo 2026. On one wall is an image from my Book NO ES HORA DE JUGAR illustrated by Elina Braslina. It shows a girl and her two, bearded dads, one of whom in a blue longsleeved shirt ihas his eyes closed and one arm raised over his head. The other dad, in a green sweater, smiles and has rosy cheeks. The girl is clutching her stuffed bear, which they have just gotten back from Rex (who is offscreen in this image). The text above the image reads: DETRÁS DEL SOFA Y BAJO LA MESA (Behind the sofa and under the table--where they have chased Rex to get the teddy back). Held in front of the wall is a copy of the book open to the first spread, which has ink and braille text above the art and pictograms underneath. The left image shows Rex, a small black and white dog, with a res ball in his mouth, wanting to play. Right image is a yawning, long-haired pink-skinned girl, who is trying to get ready for bed. A photo of the stand for Dado Editorial Sensorial at the FILBo 2026. On one wall is an image from my Book NO ES HORA DE JUGAR illustrated by Elina Braslina. It shows a girl and her two, bearded dads, one of whom in a blue longsleeved shirt ihas his eyes closed and one arm raised over his head. The other dad, in a green sweater, smiles and has rosy cheeks. The girl is clutching her stuffed bear, which they have just gotten back from Rex (who is offscreen in this image). The text above the image reads: DETRÁS DEL SOFA Y BAJO LA MESA (Behind the sofa and under the table--where they have chased Rex to get the teddy back). Standing in front of the image are four people. Under the image is a magnetic board on which people have arranged various pictograms. A photo of the stand for Dado Editorial Sensorial at the FILBo 2026. On one wall is an image from my Book NO ES HORA DE JUGAR illustrated by Elina Braslina. It shows a girl and her two, bearded dads, one of whom in a blue longsleeved shirt ihas his eyes closed and one arm raised over his head. The other dad, in a green sweater, smiles and has rosy cheeks. The girl is clutching her stuffed bear, which they have just gotten back from Rex (who is offscreen in this image). The text above the image reads: DETRÁS DEL SOFA Y BAJO LA MESA (Behind the sofa and under the table--where they have chased Rex to get the teddy back). Standing in front of the image is a person of indeterminate gender, wearing a gray t-shirt and a gray back pack. Their back is to the viewer and they have long black hair. They are holding in one hand a magnetic pictogram. On the wall in front of the. One pictogram has been put in place on a blank line, underneath the text from the book spelled out in braille using large, raised black dots. Two other people are partially visible in the image, on the left and right sides respectively. Both dressed in black and wearing glasses (the man on the left, in a Pink Floyd t shirt, wearing sunglasses). The man on the right is wearing a black jacket with the logo of the publisher: Dado Editorial Sensorial. A photo of the stand for Dado Editorial Sensorial at the FILBo 2026. On one wall is an image from my Book NO ES HORA DE JUGAR illustrated by Elina Braslina. It shows a girl and her two, bearded dads, one of whom in a blue longsleeved shirt ihas his eyes closed and one arm raised over his head. The other dad, in a green sweater, smiles and has rosy cheeks. The girl is clutching her stuffed bear, which they have just gotten back from Rex (who is offscreen in this image). The photo shows a left hand with long painted yellow nails and a ring on the ring finger, wearing a long sleeved white jacket, reaching up to touch the textured beard of the smiling dad in the green sweater.
April 29, 2026 at 5:22 AM
eye-tuebingen.bsky.social
Three young scientists from the IOR Tübingen earned prestigious #RD2025 Travel Awards to present their retinal research in Prague! Congrats 💪
#RetinitisPigmentosa #AMD
@tueneurocampus.bsky.social @unituebingen.bsky.social

👉 www.eye-tuebingen.de?tx_news_pi1%...
September 29, 2025 at 2:19 PM
blindbibliophile.bsky.social
It’s nice to meet you!! #disabilitypridemonth #retinitispigmentosa #booksky #bookskycommunity
July 7, 2025 at 1:12 PM
theblindredhead.bsky.social
Day 30 of Disability Pride Month. Blind journalist Andrew Leland wrote “The Country of the Blind: A Memoir at the End of Sight.” I loved this book and you can find it on BARD!

www.penguinrandomhouse.com/books/687621...

#DisabilityPrideMonth #BookSky #BlindCulture #RetinitisPigmentosa
www.penguinrandomhouse.com
July 30, 2026 at 8:31 PM
rpimpactinitiative.bsky.social
Seeing is not all or nothing. Retinitis Pigmentosa can affect night and peripheral vision. Seeing a face does not mean noticing every obstacle.
www.oogvereniging.nl/oogziekte/re...
#RetinitisPigmentosa
RP Impact Initiative graphic. Seeing a face. Missing an obstacle. Retinitis Pigmentosa can affect night vision and peripheral vision. Experiences differ.
September 28, 2026 at 4:31 PM
jamesfasham.bsky.social
Mathieu Quinodoz #ESHG2025

De novo & inherited dominant variants in U4 and U6 snRNAs cause retinitis pigmentosa

1.4% unsolved #RetinitisPigmentosa cases solved with variants in #RNU4-2
#RNU6-1 #RNU6-2 #RNU6-9

#MorbidGene

www.medrxiv.org/content/10.1...

Age of onset typically 15-30y
May 25, 2025 at 8:46 AM
christmascoffee.bsky.social
A thread 🧵 about #GuideDogs and #LongCanes

#BlindSky
#UsherSyndrome
#RetinitisPigmentosa
christmascoffee.bsky.social Christmas Coffee @christmascoffee.bsky.social · Feb 2
The differences between using a white long cane and having a guide dog partnership:

A long cane is used in a sweeping motion in front of the user, basically ensuring the ground directly in front is safe to step into. The cane will bump into any object and that bump travels up the cane to the user…
February 2, 2025 at 8:24 PM
blindbibliophile.bsky.social
Hi new book besties! My name is Brittany! A few things about me -
✨I love reading
✨I have a condition called Retinitis Pigmintosa which is causing me to go blind
✨I love food, travel, books, and talking about what it looks like to be blind. Let’s be friends! #books #retinitispigmentosa #booksky
A woman in a mushroom hat sitting on a bench
January 27, 2026 at 2:46 PM
disabilitydaily.bsky.social
Today on the #Disability Daily #Podcast we celebrate Willie Brown, a #California politician & former Democratic mayor of San Francisco with #RetinitisPigmentosa.

Listen & read transcript:
disabilitydaily.podbean.com/e/episode80/

#blind #a11y #SF #LowVision #BlackSky #EduSky #law #lawyer #CA 🗃️
A close-up portrait of Willie Brown, wearing a brown fedora hat, striped shirt, and red tie. He has a graying mustache and a slight smile and thoughtful expression, looking off-camera.
March 23, 2025 at 10:03 PM
plosbiology.org
#RetinitisPigmentosa is a blinding disease caused by misfolding mutations in #rhodopsin. This study identifies two pharmacologically promising compounds that stabilize misfolded, ligand-free rod opsin and slow down photoreceptor degeneration in a mouse model of RP 🧪 @plosbiology.org plos.io/3DSgI0O
Protective effect of JC3 and JC4 against retinal degeneration in RP. Top: retinal sections treated with vehicle, JC3 and JC4, stained with HE. Middle: retinal cryosections treated with vehicle, JC3 and JC4, stained with 1D4 anti-Rho antibody and peanut agglutinin to detect rods and cones, respectively. Bottom: Structural basis for variant-specific pharmacochaperone effects. Bound state human WT rod opsin models, highlighted with interacting sites for JC3 and JC4 docked models.
January 16, 2025 at 9:46 AM
kendarnekoli.bsky.social
My lifemate, @khaoslily133.bsky.social, is 43 followers from 1k!

She is a blind variety gaming #ENVTuber. She was born with congenital cataracts & has #RetinitisPigmentosa, leaving her with only 5% vision in one eye. She's super friendly & is very responsive to her community. Why not check her out?
May 19, 2025 at 1:55 AM
disabilitydaily.bsky.social
Today on the #Disability Daily #Podcast we celebrate #blind American civil rights #lawyer & federal #judge, Dr. David Tatel!

Listen & read transcript: disabilitydaily.podbean.com/e/episode76/

#RetinitisPigmentosa #LowVision #braille #a11y #EduSky #CivilRights #law #GuideDogs #WashingtonDC 🗃️
A balding David Tatel at a podium with two microphones. He wears a black judge's robe, and a white collar and burgundy tie are visible.
March 20, 2025 at 4:28 PM
rpimpactinitiative.bsky.social
Radboudumc onderzoekt gentherapie bij vormen van Retinitis Pigmentosa. Experimenteel onderzoek is nog geen behandeling voor iedereen.
www.radboudumc.nl/afdelingen/o...
#RetinitisPigmentosa
RP Impact Initiative-afbeelding. Ook in Nederland wordt onderzocht. Van erfelijke oorzaak tot ziekteverloop: kennis opbouwen is onderdeel van vooruitgang. Bron: Radboudumc expertisecentrum.
October 1, 2026 at 4:30 PM