PNH India Alliance

PNH India Patient Advocacy Group

[PNH India Alliance @PNHIndia]

i haven’t been active because of personal reasons.. but I am here now .. for the patients, by the patients .. follow us on @PNHIndia to connect with us

[PNH India Alliance @PNHIndia]

@Muhammed_iq_bal @Vismaya9999 It would be interesting to see how affordable it is for India, releasing is one thing, affording is another.. hope the company understands the difference.

[PNH India Alliance @PNHIndia]

@aiims_newdelhi @PGi @MoHFW_INDIA @ICMRDELHI @GlobalPnh @rashtrapatibhvn @PMOIndia

[PNH India Alliance @PNHIndia]

@themaxfndn @Novartis @NovartisGH Any plans for India as well?

[PNH Global Alliance @GlobalPnh]

This month, we celebrated Universal Health Coverage Day. We believe that every person living with PNH deserves equal access to quality healthcare, no matter where they live. Let’s advocate for stronger health systems and ensure that no one is left behind.

[PNH India Alliance @PNHIndia]

@ICMR_RMRCBBSR @nptel_official @ICMRDELHI @IPR_Odisha @MahalingMukesh @MoHFW_INDIA @PIBBhubaneswar @DeptHealthRes @JPNadda @PIB_India @HFWOdisha Patient Advocacy interested individuals can apply too?

[PNH Global Alliance @GlobalPnh]

🎉 The PNHGA Advocate Development Program concludes! From Dec 2023 to Nov 2024, participants learned about PNH, treatments, research, and advocacy, among others. Highlights included in-person connections at EHA Madrid 2024. Huge thanks to everyone involved! 🙌💙 #PNH #Advocacy

[PNH India Alliance @PNHIndia]

@GlobalPnh Many thanks for the opportunity and the experience gained from the session has been valuable and highly beneficial.

[PNH India Alliance @PNHIndia]

@NewsReporterSOW @HealthcareGlob1 @dwyer_mrs @InsularEntropy @dr_jon_l @AaronKheriatyMD @nathan_money_do Are there any available in India to aid financial burden

[PNH India Alliance @PNHIndia]

@Satyayadav__ @HealthChmp @ChandnaHimani @Roche How would a PnH patient get this.. ? We are a group of 15-20 patients from across looking for the drugs in India.

[PNH India Alliance @PNHIndia]

@BioethicsJ How to get this and cost associated with it.. is it available in market now?

[PNH Global Alliance @GlobalPnh]

🌍Introducing the International PNH Interest Group (IPIG): A global network of 400+ physicians from 55 countries, dedicated to advancing knowledge and improving care for PNH patients. The only global society focused exclusively on PNH treatment! https://t.co/kez8NlyPcS

[Thalassemia Patients Advocacy Group @pagthals]

This is not our 1st attempt & won’t be our last. We will keep remininding the @MoHFW_INDIA and @Novartis @NovartisIndia of how every day of inaction denies #thalasemia patients of medicines like #desferal and other facilities! @OfficeofJPNadda @AtishiAAP

[PNH Global Alliance @GlobalPnh]

Today is Global PNH Awareness Day!🎉🌍Thank you for your support during our campaign. We've raised awareness and supported those affected by PNH. Stay tuned for more!. Let’s make every day a step closer to equal care and treatment. #PNHAwareness2024 #TreatingPNH

[PNH Support @PNHSupport]

Today is Global PNH Awareness Day!🎉🌍Thank you for your support during our campaign. We've raised awareness and supported those affected by #PNH. Stay tuned for more info we'll be posting today. Let’s make every day a step closer to equal care and treatment. #PNHAwareness2024

[PNH Global Alliance @GlobalPnh]

#DidYouKnow that untreated Paroxysmal Nocturnal Hemoglobinuria (PNH) can lead to severe complications? It's crucial to be aware of the risks: #PNHAwareness2024

[PNH Global Alliance @GlobalPnh]

If you are #TreatingPNH, please make sure your patients are informed of the potential complications (VTEs are 62 times more likely to occur in PNH patients compared to the general population!) #PNHAwareness2024

[PNH Global Alliance @GlobalPnh]

If you are #TreatingPNH, don't forget to check the D-Dimer! - every increase of the PNH clone by 10% increases the risk of thrombosis by a factor of 4. #PNHAwareness2024

[PNH Global Alliance @GlobalPnh]

If you are #TreatingPNH, please encourage your patients to get a feeling for their personal hemoglobin limit before needing a transfusion #PNHAwareness2024

[PNH Global Alliance @GlobalPnh]

#DidYouKnow We’ll be sharing crucial PNH facts over the next week? Here’s a preview video with important info! If you’re #TreatingPNH, feel free to share this informative video with your patients. Stay tuned for more updates #PNHAwareness2024 💪✨