Top Tweets for #drpla

about 1 month ago

CureDRPLA：脊髄小脳変性症、進行性ミオクローヌスてんかんの一種でもあるDRPLA(歯状核赤核線条体ルイ体萎縮症)の治療研究などを推進を支援する患者団体。日本は米国やヨーロッパなどに比べ有病率が高く、有効な治療の開発が待たれています。https://t.co/B1cKQ4wXr3　＃てんかん　＃DRPLA　＃歯状核赤核線条体ルイ体萎縮症

669

Annals of Indian Academy of Neurology @AnnIndAcadNeur

6 months ago

DRPLA causes cognitive impairment + refractory epilepsy in children and ataxia in adults. It is a CAG repeat disorder showing anticipation. @drayushagarwal et al showed these phenomenon in 3 successive generations in a family. @Divyani_Garg #DRPLA #ataxia https://t.co/rTJ4Z5JbUs

$AnnIndAcadNeur's tweet photo. DRPLA causes cognitive impairment + refractory epilepsy in children and ataxia in adults. It is a CAG repeat disorder showing anticipation. @drayushagarwal et al showed these phenomenon in 3 successive generations in a family. @Divyani_Garg #DRPLA #ataxia https://t.co/rTJ4Z5JbUs https://t.co/B18J42f32j$

Dame Sa 🐝 3.5% @LongCovidHell

9 months ago

“Jessica is one of a cluster of people in south Wales affected by Dentatorubral-pallidoluysian atrophy, or DRPLA, an inherited and progressive neurological disorder for which there is no known treatment or cure.” #DRPLA https://t.co/Nca9fR2tE5

306

一般社団法人　日本難��・疾病団体協議会（ＪＰＡ） @nanbyo_0523

about 1 year ago

トーク番組 #ふらっとモーニング第31回 4月26日（土）AM9：30から配信！ゲストは #DRPLA #歯状核赤核淡蒼球ルイ体萎縮症家族会代表の #塩沢淳子さん番組MC #とりちゃん娘さんが受けている世界で２例目の臨床試験の話を中心に伺います。 https://t.co/RhEJzZILQz #脊髄小脳変性症 #神経難病

nanbyo_0523's tweet photo. トーク番組 #ふらっとモーニング第31回
4月26日（土）AM9：30から配信！

ゲストは #DRPLA #歯状核赤核淡蒼球ルイ体萎縮症家族会代表の #塩沢淳子さん
番組MC #とりちゃん

娘さんが受けている世界で２例目の臨床試験の話を中心に伺います。

https://t.co/RhEJzZILQz

#脊髄小脳変性症
#神経難病 https://t.co/m1r6QvcCUp

塩沢淳子 @junkoshiozawa

over 1 year ago

12/12/24　1日でも早く薬が届きます様に ⇒ https://t.co/s9NFRQbHY1 #アメブロ @ameba_officialより ��ハワイ　＃介護　＃難病　＃DRPLA #CureDRPLA #nLorem

258

丸山雄也｜難病支援の地域おこし協力隊 @niigata_nanbyou

over 1 year ago

【メディア連携事例】神経難病との闘い｜『脊髄小脳変性症』と闘う家族の絆と希望の光は https://t.co/i4IxLXTQRJ #地域おこし協力隊 #難病 #新潟県 #脊髄小脳変性症 #新潟県地域おこし協力隊 #難病支援 #UX新潟テレビ21 #メディア連携 #DRPLA #歯状核赤核淡蒼球ルイ体萎縮症

Ataxia Centre - UCL Institute of Neurology @AtaxiaCentreUCL

over 1 year ago

Our colleague Dr Rosella Abeti presented her #research work at #ICAR2024 on #mitochondrial metabolism in #DRPLA #ataxia @CureDrpla @AtaxiaUK She also had a poster with our collaborator Prof Richard Festenstein #friedreich #ataxia #biomarkers @giunti_paola @icar_ataxia @UCLIoN

AtaxiaCentreUCL's tweet photo. Our colleague Dr Rosella Abeti presented her #research work at #ICAR2024 on #mitochondrial metabolism in #DRPLA #ataxia @CureDrpla @AtaxiaUK
She also had a poster with our collaborator Prof Richard Festenstein #friedreich #ataxia #biomarkers
@giunti_paola @icar_ataxia @UCLIoN https://t.co/BwAyi4dmLc

191

塩沢淳子 @junkoshiozawa

over 1 year ago

11/1/24　大成功でした！ ⇒ https://t.co/6g2GqiQ6Xo #アメブロ @ameba_officialより＃ハワイ　＃治療法　＃難病　＃DRPLA

223

【公式】全国脊髄小脳変性症・多系統萎縮症友の会(JSAP) @scdmsa_official

almost 2 years ago

ブログ内の動画を是非ご視聴ください。DRPLAの患者家族会を立ち上げている塩沢淳子さんが、娘さんのクリさんと一緒に医療者向けにご講演されています。「一つでも多くの病気の治療法が見つかる様に」「全ての患者家族に励ましが届く様に」＃DRPLA ＃脊髄小脳変性症

塩沢淳子 @junkoshiozawa

almost 2 years ago

『拡散希望』希望を捨てないで！ ⇒ https://t.co/va2uEyw5Yw #アメブロ @ameba_officialより＃臨床試験　#拡散希望RPお願いします＃難病

781

こめこ。 @komekono

almost 2 years ago

【全ての医療関係者に全ての病気と闘っている患者と家族に届いてほしい】ｱﾒﾌﾞﾛで応援している紅梨（クリ）ちゃんと淳子ママ脊髄小脳変性症の娘さんの治療薬開発のため、笑顔を忘れず、強い強い心で進まれています。そんな淳子さんの姿にいつも力をもらっています🍀 #DRPLA #脊髄小脳変性症

塩沢淳子 @junkoshiozawa

almost 2 years ago

『拡散希望』希望を捨てないで！ ⇒ https://t.co/va2uEyw5Yw #アメブロ @ameba_officialより＃臨床試験　#拡散希望RPお願いします＃難病

590

塩沢淳子 @junkoshiozawa

about 2 years ago

6/6/24　私の人生 ⇒ https://t.co/gDV0oFWmA7 #アメブロ @ameba_officialより＃ハワイ　＃介護　＃難病　＃DRPLA

174

paco｜デザイン&介護 @paco_twt

over 2 years ago

『#DRPLA 世界初臨床試験』 https://t.co/5KraTisnmD

803

DOC HOLY DAY @SUNDOWNESTUDIOS

over 2 years ago

Explosion Clean #music #prog #drawing #analoguehorror #art #metal #drpla... https://t.co/EEAV6NO298 via @YouTube

119

Ataxia UK @AtaxiaUK

almost 3 years ago

The International Congress of Parkinson’s Disease & Movement Disorders in Copenhagen drew a remarkable crowd of 5,200 attendees. It is rewarding to grow the ataxia community & witness how these efforts radiate out across the world. #AtaxiaUK #Ataxia #DRPLA

AtaxiaUK's tweet photo. The International Congress of Parkinson’s Disease & Movement Disorders in Copenhagen drew a remarkable crowd of 5,200 attendees. It is rewarding to grow the ataxia community & witness how these efforts radiate out across the world.

#AtaxiaUK #Ataxia #DRPLA https://t.co/1Sh4jJCiTk

382

Ataxia UK @AtaxiaUK

over 3 years ago

They met with eight family members that care or have cared for loved ones with DRPLA and two people with DRPLA. It was a great day for all. Silvia has written an article about it https://t.co/5itxd8GT8P #AtaxiaUK #Ataxia #Research #Cardiff #DRPLA #Families

AtaxiaUK's tweet photo. They met with eight family members that care or have cared for loved ones with DRPLA and two people with DRPLA. It was a great day for all. Silvia has written an article about it https://t.co/5itxd8GT8P

#AtaxiaUK #Ataxia #Research #Cardiff #DRPLA #Families https://t.co/WvqqVmUuFo

364

Ataxia UK @AtaxiaUK

over 3 years ago

The funding for the study is provided by CureDRPLA. This is a global study, including a UK site at the London Ataxia Centre, which is now recruiting participants. For more information, see: https://t.co/pEMbII1bXS #TeamAtaxiaUK #ataxiatrial #drpla #ataxiaresearch

AtaxiaUK's tweet photo. The funding for the study is provided by CureDRPLA. This is a global study, including a UK site at the London Ataxia Centre, which is now recruiting participants. For more information, see: https://t.co/pEMbII1bXS

#TeamAtaxiaUK #ataxiatrial #drpla #ataxiaresearch https://t.co/SdRKEwGOcn

多系統萎縮症疑い息子の家族 @PhnBmgPR3K8KGOG

about 4 years ago

日本の法律では、一度延命処置したら、中止できない。延命治療中のDRPLAのお子さんを介護している親は、子供を救いたい以外の気持ちも、強く持てているのだろう。 #DRPLA

塩沢淳子 @junkoshiozawa

over 4 years ago

11/24/21　ママは思うのです ⇒ https://t.co/xRRr7cf4Xc #アメブロ @ameba_officialより #DRPLA, #脊髄小脳変性症

Ataxia UK @AtaxiaUK

over 4 years ago

At the #AtaxiaUKvirtualconference Prof. Barry gave an overview of #ataxia research since the millenium, Julie Greenfield: Friedreich’s #ataxia, Ruby Wallis: cerebellar ataxias, Silvia Prades: #DRPLA, and Dr Marios Hadjivassiliou: update on gluten and immune ataxias. #TeamAtaxiaUK

AtaxiaUK's tweet photo. At the #AtaxiaUKvirtualconference Prof. Barry gave an overview of #ataxia research since the millenium, Julie Greenfield: Friedreich’s #ataxia, Ruby Wallis: cerebellar ataxias, Silvia Prades: #DRPLA, and Dr Marios Hadjivassiliou: update on gluten and immune ataxias. #TeamAtaxiaUK https://t.co/Oquvc5jhSG

Ataxia UK @AtaxiaUK

over 4 years ago

The company have identified antisense oligonucleotides (ASOs) for SCA and DRPLA. ASOs block the ability of a certain gene to make a protein. Q-State Biosciences have seen positive results in cell and animal models. #AtaxiaUK #DRPLA #SCA Press release: https://t.co/aYWG3TMqWp

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