Gene therapy restores light sensitivity in some blind people #eyeresearch #genetherapy #retinitispigmentosa
@dailyalpine.com
@dailyalpine.comGene therapy restores light sensitivity in some blind people #eyeresearch #genetherapy #retinitispigmentosa
@unibas.chA gene therapy combined with special goggles can help people with advanced #retinitispigmentosa, a severe inherited retinal disease, perceive simple visual information again. A study involving @iobswiss.bsky.social & @unibas.ch has now found improvements in visual perception in several participants.
@rpimpactinitiative.bsky.socialRetinitis Pigmentosa can make reading and computer work harder. Magnification and text-to-speech can help with daily tasks. They do not repair the retina. Support and research both matter.
www.thuisarts.nl/retinitis-pi...
#RetinitisPigmentosa
@bowstreetsociety.bsky.socialSIGHT LOSS: The Horror of Misconceptions
To many, October is spooky season, but it’s also Blind Awareness Month. In this month’s blog, I'll be challenging some commonly held misconceptions about sight loss: bowstreetsociety.com/sight-loss-t...
@rpimpactinitiative.bsky.socialOur 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
@zompjam.bsky.socialJam'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.
@rpimpactinitiative.bsky.socialRadboudumc onderzoekt gentherapie bij vormen van Retinitis Pigmentosa. Experimenteel onderzoek is nog geen behandeling voor iedereen.
www.radboudumc.nl/afdelingen/o...
#RetinitisPigmentosa
@rpimpactinitiative.bsky.socialRetinitis 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
@rpimpactinitiative.bsky.socialRetinitis Pigmentosa kan zien in het donker en het gezichtsveld aantasten. Een trap of drukke straat kan daardoor lastig worden. Het verloop verschilt. Begrip én onderzoek zijn nodig.
www.oogvereniging.nl/oogziekte/re...
#RetinitisPigmentosa
@rpimpactinitiative.bsky.socialSeeing 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
@rpimpactinitiative.bsky.socialRP Impact Initiative aims to raise money for research into Retinitis Pigmentosa. Before asking for donations, we want written agreement on the recipient, the research funded, costs and reporting. We do not yet have a validated donation route. #RetinitisPigmentosa
@rpimpactinitiative.bsky.socialEen bericht over Retinitis Pigmentosa delen? Controleer wie de bron is, wanneer het verscheen en wat nog onzeker is. Een hoopvolle kop is geen behandeladvies. Deel betrouwbare uitleg, geen beloften over genezing.
#RetinitisPigmentosa #Oogonderzoek
@rpimpactinitiative.bsky.socialA useful question about Retinitis Pigmentosa research: what would a meaningful result change in daily life? The priorities of people with RP matter alongside scientific measurements. Research communication should keep people in view.
#RetinitisPigmentosa #EyeResearch
@rpimpactinitiative.bsky.socialOur mission: mobilise more funding for rigorous Retinitis Pigmentosa research. We are still validating a receiving route. We are not collecting donations or announcing a partnership. Hope deserves careful work.
@rpimpactinitiative.bsky.socialWat helpt jou? Die vraag geeft iemand ruimte om zelf te vertellen. Wij willen in onze communicatie over Retinitis Pigmentosa luisteren, niet invullen wat iemand nodig heeft. Deel geen medische gegevens om gehoord te worden.
@rpimpactinitiative.bsky.socialCompared with what? When reading a trial, check its study groups and what each receives. Not every study uses the same design. That context matters when interpreting results.
Source: clinicaltrials.gov
#RetinitisPigmentosa #ClinicalResearch
@rpimpactinitiative.bsky.socialEen onderzoeksbericht lezen? Begin bij de vraag: wat willen onderzoekers precies weten? Kijk daarna wie meedoet en wat wordt gemeten. Een studietitel vertelt niet het hele verhaal.
@rpimpactinitiative.bsky.socialOne study is a starting point. Independent replication tests whether a finding holds up with new data. Consistent results can strengthen confidence; differences need investigation.
Source: National Academies (2019)
#RetinitisPigmentosa #Research
@rpimpactinitiative.bsky.socialBefore a fundraising ask, five questions need written answers: recipient, exclusive RP earmarking, costs, independent research selection and reporting.
Clarity first. Fundraising second.
#RetinitisPigmentosa #ResearchFunding
@rpimpactinitiative.bsky.socialBij Retinitis Pigmentosa komen nachtblindheid en een kleiner wordend gezichtsveld vaak voor. Wanneer klachten beginnen en hoe ze verlopen, verschilt per persoon.
Goede communicatie laat ruimte voor die verschillen.
Bronnen: Oogvereniging en Radboudumc
#RetinitisPigmentosa #LevenMetRP
