Cure Batten India

Cure Batten India is dedicated to find way for research for treatment and cures, providing family support / guidance for Batten disease also known as NCLs.

[Mila's Miracle @stopbatten]

When the pain hits, it knocks me down so hard that I barely have it in me to get back up. I feel my mind desperately searching for Mila...

https://t.co/6kh4FtZSSk

[Sanford Health @SanfordHealth]

Sanford Health would like to invite your child, 0-5 years old, to participate in a screening research study. We hope to learn better ways to identify and predict which children may be at risk of developing T1D and celiac disease. https://t.co/2QTWWQ6rNT

[Jen VanHoutan @FarnieVanHoutan]

Trivia fundraiser on 5/1 for a beautiful Princess with CLN6 Batten disease - hosted by her cousin. 💜join if you can!!

[Neuromuscular Disease Foundation @CureHIBM]

Canadian researchers duplicated a patient's rare disorder in a mouse, and used gene editing to cure it. https://t.co/IYktgJfpcd
#genetics #DNA #raredisease #neuromusculardisease #gnemyopathy #neuromusculardiseasefoundation #biotech #GeneTherapy

[Prasanna Shirol @Prasannashirol]

@NewsX @ORDIndia On #internationalPompeDay watch discussion, challenges of #Pompe by Stakeholders #India @MoHFW_INDIA @PMOIndia @narendramodi_in @PompeUK @pompresse @pompecanada @AlliancePompe @PompeNowWhat @ClubPompe @australianpompe @PompeNowWhat @PompeWales @ORDIndia @WHO @NITIAayog @NewsX

[Sanford Research @SanfordResearch]

New article by @DrJWeimer demonstrates intracerebroventricular delivery of an AAV9-medidated gene therapy in a mouse model of CLN6-Batten disease prevents hallmark disease pathology in the visual processing centers & partially preserves visual acuity. https://t.co/wSSRVVjl6F

[Rahul kumawat @Pedal_India]

#Mumbai
Need A+ve #Blood #Plasma from #CoVid recovered person
At Prachi Hospital, Thane
Call 7738546672
@iCanSaveLife @BloodDonorsIn @BloodAid @sameeratweeter @asitbaran @kuttrapali

[Taysha Gene Therapies @TayshaGTx]

Today, we are pleased to announce the acquisition of exclusive worldwide rights to a clinical-stage AAV9 #genetherapy program, now known as TSHA-120, for the treatment of giant axonal neuropathy (GAN). Join our conference call and webcast to learn more: https://t.co/RzejLX894M

[Cure Batten India @BattenCure]

@njrchfoundation Lovely and touched ❤

[BioVoice News @BiovoiceNews]

HEALTH POLICY: @ORDIndia says it is disappointed with the fresh National Policy for #RareDiseases, 2021 released by @MoHFW_INDIA as it fails to acknowledge real challenges of rare disease patients & their families.

More: https://t.co/ijuROrJSSQ via @BioVoiceNews @Prasannashirol

[Jeeva Clinical Trials Inc. @Jeevatrials]

Travel can hinder patient recruitment and retention. That's why Jeeva brings clinical studies to the patients wherever they live.

We appreciate all who support our mission.

<3 Ellen Meinart <3 #diversity #clinicaltrials clinicalresearch @VEDPVirginia @virginiaexports

[Prasanna Shirol @Prasannashirol]

If #CDFD has a #capacity to do 200 #genetic test/day.Why #COE has to invest again on costly #sequencer. This shows you knew theburden of #RareDisease If yes how did you arrive at capacity requirements & planned? @PMOIndia @MoHFW_INDIA @narendramodi_in @drharshvardhan @ORDIndia

[Prasanna Shirol @Prasannashirol]

Only 8 #COE for #India & for challanging conditions. 4 in #North only 2 in #South what discrimination? We need min1 per state. Why patient has to travel 500-1000km in #NewIndia for #dignosis is it #InclusiveIndia @PMOIndia @PMOIndia @MoHFW_INDIA @NITIAayog @drharshvardhan

[Prasanna Shirol @Prasannashirol]

Only 5 #NIDAN kedra in #NPRD2021 3 in North 1 in South Discrimation here also. When can #RareDisease community will get #support in #NewIndia @PMOIndia @NITIAayog @MoHFW_INDIA @DrHVoffice @BJP4India Nil @CMofKarnataka @CMOKerala @CMOTamilNadu

[Prasanna Shirol @Prasannashirol]

#crowdfunding cannot be part of #NPRD2021 we were already using for #supportive #treatment we looked up to @MoHFW_INDIA @DrHVoffice to #SAVEOURCHILDEN not a website of costing Rs 5000 and get away. @PMOIndia need to intervene @IndianExpress @republic @ORDIndia @NITIAayog @ndtv

[Prasanna Shirol @Prasannashirol]

@tatatrusts @RNTata2000 @InfyFoundation have felt treatment to #RareDiseases is a #Govt duty and said they dont provide financial support to our several requests. How @MoHFW_INDIA expect contribution now when children are #dying without #treatment. Every life has value @PMOIndia

[Prasanna Shirol @Prasannashirol]

Thank you @PMOIndia @narendramodi_in @MoHFW_INDIA @DrHVoffice for new #RareDiseasepolicy #NPRD2021 without any committment to save our children's. Thank you for official communication instructing us to #BEG if we want save our #children #life. @TOIIndiaNews @TheHindu #health

[Nicole Rich @njrchfoundation]

We wanted to say thank a lovely lady called Nova who runs a shop on @Etsy called ‘NiNuBo’ for pulling out of the stops to make sure Nicole got this gorgeous handmade garland in time for her birthday (1stMarch!)💗We adore it!Thank you @lizrich21 🧜‍♀️🦄🌈⛅️ #handmade #hopeforbattens

[Cure Batten India @BattenCure]

@Save_Arian @BattenDisease Please share the care giver details of the CLN6 kid, so that we can try for upcomming Clinical Trials if any.

[Sanford Health @SanfordHealth]

CoRDS is a free, international registry for all rare diseases and conditions, undiagnosed symptoms and unaffected carriers. The rare disease registry connects causes, treatments and patients across the world. Learn more: https://t.co/xw8Q7Pcdfd