Patient advocates from across India who believe there can be #NothingAboutUsWithoutUs. We talk about #safeblood #disability #thalassemiaprevention

Joined January 2018
230 Photos and videos
Announcing the 3rd edition of #SADT awards for excellence worth 1 lakh for #thalassemia patients who remain unstoppable! #InternationalThalassemiaDay @thalindia
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TPAG is thankful to @AnujaJaiswalTOI for raising this critical issue of #desferal #essentialmedicine for #thalassemia patients. We demand urgent intervention by @MoHFW_INDIA @JPNadda @NITIAayog @DghsIndia @nppa_india @gupta_rekha
Very important issue picked by TOI , strange that authorities are believing the manufacturer and not checking suffering of Thalassemia patients in Public Hospitals
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With the release of its position paper on safe blood transfusion services, TPAG takes another concrete step in its journey to advocate safe blood and prevent TTIs like HIV, HCV, etc in #thalassemia patients and other recipients of blood. #safeblood #HIV #HCV @MoHFW_INDIA @thalindia drugtodayonline.com/medical-… @IBloodDisorders
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Let’s save #thalassemics, save #blood! @thetribunechd India is no more a country that spends decades on regulatory #approvals. We urge companies like @AgiosPharma to bring the wonder drug for #thalassemia to India and co-curate #access pathways that are a win-win for the company as well as patients. Inclusion in govt reimbursement schemes, unique patient access programmes, etc must be considered. @MoHFW_INDIA @OfficeofJPNadda @tuhins @PRupala @CoalIndiaHQ @IBloodDisorders @thalindia @bindasbhidu share.google/fXwquD46uKS0BlS…

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As #Jharkhand HC delivers a ground breaking judgment on #safeblood NAT machines for safe blood screening rot in Punjab’s Faridkot. TPAG and other patient bodies raise questions as to who will take the responsibility for #thalassemia patients contracting HIV, HCV or any other TTI while P&H HC considers a dispute related to the machines! @BhagwantMann @thetribunechd @tuhins @OfficeofJPNadda @thalindia @thalassaemiaTIF @atulgera007
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TPAG welcomes the National Blood Transfusion Bill tabled in #Parliament and urges esteemed members of parliament to ensure smooth passage of this Bill! We hope this leads to #SafeBlood not only for #thalassemia patients but for every recipent of blood. @MoHFW_INDIA @tuhins @PRupala @bejonmisra @sagarikaghose
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Finally our demands reached the #Parliament of the country and a Bill for #Blood Law has been tabled in this session. Thanks for everyone who has been a part of this journey! Destination is closer! @tuhins @PRupala @rammadhav @thalassaemiaTIF @thalindia
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Sad to see LNJP #thalassemia patients denied treatment…hope for a solution soon! #Disability @MoHFW_INDIA @AnupriyaSPatel @IndianExpress
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Hon’ble @DelhiCM25 @RekhaGuptaDelhi ji we urge you to please intervene in the matter of LNJP hospital asking adult #thalassemia patients to leave hospital and go elsewhere. Where will these patients go? #thalassemia @JPNadda @AnupriyaSPatel @smritiirani
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A huge milestone in the journey of #safebloodforall as @DelhiGovDigital sets up a cell to monitor #bloodtransfusions! We appreciate Delhi Government for acknowledging the issue of safe blood and #transfusiontransmittedinfections caused by unsafe blood. @gupta_rekha @thalassaemiaTIF @thalindia @htTweets
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It’s no more about what patients want, it’s now about their rights! TPAG is proud to bring together speakers from the #political, #legal and academic fraternity for a thought provoking panel discussion on #safeblood on 17th July at IIC Dehi. DM to receive your invite or write to anubha@thalassemiapag.org. @thalindia
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TPAG continues its advocacy for #essentialmedicines like #desferrioxamine that has been missinf from government supplied for years. @navbharattimes_ @thalindia @MoHFW_INDIA
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Dear @MoHFW_INDIA Can we dream of this #GeneTherapy in India? Do #thalassemia patients of India deserve #access to cure? Are we actually moving towards #ViksitBharat2047? @narendramodi @JPNadda
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🩸 28-year-old Tim Chronis became the 1st UK patient with β-#Thalassaemia to receive #Casgevy—a #CRISPR therapy that may eliminate the need for lifelong #BloodTransfusions. Delivered at Manchester Royal Infirmary via the #NHS. A new era begins. 👇 bbc.com/news/articles/cgmww1…
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#TPAG is grateful to residents of #Heartsong at the @Experion_234 Gurgaon for coming out in this heat to donate blood for #thalassemia patients of government hospital #LHMC. Special thanks to to @avianWE for this gesture. It means the world to us! @thalindia @DirectorLHMC #WeLiveBecauseYouGive
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In a delegation led by @thalindia on International Thalassemia Day, TPAG member Nishtha Madan shared patients’ issues and recommendations related to care, cure and control of #thalassemia before Hon’ble President of India. She raised challenges related to #safeblood #essentialmedicines and #DisabilityBenefits #ThalassemiaAwareness @thalassaemiaTIF @rashtrapatibhvn @MoHFW_INDIA
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Ahead of #worldthalassemiaday on 8th May 2025, TPAG members met @gupta_rekha Smt Rekha Gupta, Hon’ble CM of Delhi, along with Mr. Deepak Chopra, President, @thalindia . During the meeting TPAG thanked the Hon’ble Minister for #NAT blood screening in Delhi Government Hospitals. TPAG also handed a representation for a Thalassemia free India by 2035 and urged the Hon’ble Minister to look into issues related to #VoluntaryBloodDonation and availability of essential medicines like desferoxamine in Delhi. The Hon’ble Minister committed to consider Thalassemia Free Delhi Campaign. @thalassaemiaTIF
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