Premroop Alva

President,
Hemophilia Federation (India)

[Premroop Alva @PremroopAlva]

*A Memory to Cherish 💜*
The Purple Festival hosted by the Government of Goa was truly special.

HFI had the honor of taking part alongside other disability communities pf Sickle Cell Anemia and Thalassemia, with the support of NNHF. It was a day of inclusion, joy,

[WFH @wfhemophilia]

Thank you, #Taipei and #Rotary26!

We're grateful to the Taiwan patient group volunteers, everyone who visited the WFH booth, and the St. George Sunrise Rotary Club for helping make our participation at the Rotary International Convention a success. #TreatmentForAll

[GANSID @IBloodDisorders]

Learn more about sickle cell disease for World Sickle Cell Day (June 19)! 🩸
Access our toolkit to share with your network and help raise global awareness.
https://t.co/pbuLPMvvE0
#WSCD2026 #WorldSickleCellDay #ShowYourC #GANSID

[Premroop Alva @PremroopAlva]

@abmarkman Yes

[National Health Authority (NHA) @AyushmanNHA]

#NHAWebinars
On the occasion of #WorldThalassemiaDay, join NHA’s #NirantarShikshaWebinar on strengthening implementation of #Thalassemia packages under #PMJAY, featuring experts from AIIMS, Apollo, ICMR and MCGM.

📅 7 May 2026 | ⏰ 11:15 AM
📲 Scan the QR code to join.

[Thalassemia Patients Advocacy Group @pagthals]

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

https://t.co/doenIU6G2I

[Prakash W. Kamat @PrakashWKamatPK]

@HemoIndia Advocacy in Maharashtra:
बेस्ट आडवोकेसी टीम संभाजीनगर 💐👏
आज माननीय पालकमंत्री संजयजी शिरसाठ @SanjayShirsat77
यांच्या निवासस्थानी जाऊन त्यांना हिमोफिलिया पेशंटांसाठी हिम लिब्रा इंजेक्शन उपलब्ध करून देण्यात यावे असे निवेदन देण्यात आले, व विधानसभेच्या नागपूर अधिवेशन मध्ये ही लक्षवेधी सूचना मांडावी अशी विनंती केली. आमदार प्रदीप जैस्वाल @MlaPradeepJ
व आमदार विलास भुमरे @BapuBhumre
व विधान परिषदेचे विरोधी पक्ष नेता अंबादास दानवे @iamambadasdanve
यांना पण निवेदन देण्यात आले. हिमोफिलिया सोसायटीचे श्री जाधव व श्री अशोक मानकर व त्यांची टीम उपस्थित होती 🙏👌🌷🌹
@PremroopAlva
@LoksattaLive @mataonline @fpjindia @the_hindu @htTweets @TOINaviMumbai @GoaHemophilia

[Prakash W. Kamat @PrakashWKamatPK]

Hemophilia Dhule Chapter is organising a physiotherapy workshop for Hemophilia patients from Dhule, Nandurbar and Jalgaon...the patients will get guidance and treatment from Dr Ashok Thakare, a leading physiotherapist from Pune.👍
@HemoIndia @GoaHemophilia @PremroopAlva

[GANSID @IBloodDisorders]

GANSID is honoured to be part of the American Society of Hematology (ASH) Conference this year, proudly led by our CEO, Ms. Lanre Tunji Ajayi, MSM.

Come visit us at Booth 2010 at the Orange County Convention Center in Orlando, USA

[WFH @wfhemophilia]

Join @cesargarridod, Mohsena Olath, Sare Zulfikar, @PremroopAlva, Carlos Safadi and Maria Santaella to discuss real world, community-driven solutions aimed at improving the mental well-being for people with #hemophilia. Register: https://t.co/d1MZpI4UuP
@Sanofi @Reuters

[Premroop Alva @PremroopAlva]

Along with CEO Ms. Saranga Panwar met Sh. Saurabh Jain, JS (Policy), MoHFW to exchange Diwali greetings and request treatment guidelines. HFI remains committed to bringing the concerns and issues of individuals with hemophilia to the forefront of MoHFW’s attention. #Hemophilia

[Premroop Alva @PremroopAlva]

@airindia very great serviceand smooth checkin staff ms Akshaya @BLRAirport

[Omprakash Rajenimbalkar @OmRajenimbalkr]

आज संसद भवनामध्ये माननीय सामाजिक न्याय व अधिकारिता मंत्री डॉ. वीरेंद्र कुमार यांच्या उपस्थितीत हेमोफिलिया पीडितांना शासकीय नोकरीत आरक्षण मिळावे या विषयावर एक ऐतिहासिक बैठक पार पडली. या बैठकीत माझ्यासोबत हेमोफिलिया विषयावर सातत्याने कार्यरत असलेले शासकीय आयुर्वेद महाविद्यालय आणि रुग्णालय धाराशिव येथील डॉ. शुभम रामनारायण धूतही उपस्थित होते.

हीमोफिलिया हा केवळ एक आजार नाही, तर ते हजारो कुटुंबांच्या आयुष्यातील सर्वात मोठं दुःख आहे. शरीरात रक्त साकळत नसल्याने लहानशी जखमही त्या रुग्णासाठी जीवघेणी ठरू शकते. एखादं मूल खेळताना पडलं, एखादा तरुणाला थोडीशी दुखापत झाली, तर आपल्याला ही सामान्य गोष्ट वाटते. पण हेमोफिलिया रुग्णांसाठी तीच जखम सतत रक्तस्त्राव करून त्यांचं आयुष्य धोक्यात आणणारी दुर्घटना ठरते.
यासाठी वारंवार महागड्या औषधोपचारांची गरज भासते. हिमोफिलिया रुग्णांना सातत्याने दवाखान्याचे उंबरे झिजवावे लागतात..
रुग्णाचे नातेवाईक अगतिक आणि हतबल होतात..गरिब, दुर्बल कुटुंबांना हा खर्च परवडत नाही. परिणामी अनेकांना वेळेवर उपचार न मिळाल्याने ते अंधाराच्या गर्तेत ढकलले जातात. शिक्षण, रोजगार, सामाजिक आयुष्य – सगळं थांबून राहतं. त्या पालकांच्या, त्या आई-वडिलांच्या, त्या मुलांच्या डोळ्यांत आपण सर्वांनी निराशेचे सावट पाहिलं आहे.

आज आपण चर्चा केलेला मुद्दा – हेमोफिलिया रुग्णांना शासकीय नोकरीत आरक्षण – हा केवळ रोजगाराचा नाही, तर त्यांच्या जीवनातील सन्मान, आत्मविश्वास आणि सुरक्षिततेचा प्रश्न आहे. सरकारच्या माध्यमातून त्यांना आधार, संरक्षण आणि न्याय मिळावा हीच खरी वेळेची गरज आहे.

मी नेहमी मानतो की आपण सर्वजण समाजाचे देणे लागतो.
म्हणूनच माझ्या मनातली तळमळ अशी आहे की या आजाराने त्रस्त लोकांसाठी आपण काहीतरी ठोस केलं पाहिजे. त्यांचे अश्रू पुसले पाहिजेत. त्यांच्या आयुष्यातील अंधार दूर करून त्यांना नव्या आशेचा किरण दाखवला पाहिजे.

आजची ही बैठक त्या दिशेने उचललेलं एक पाऊल आहे, आणि मी या कामासाठी मनापासून प्रयत्नशील राहून जेणे करून या ऐतिहासिक मागणीला न्याय मिळावा आणि हेमोफिलिया रुग्णांना त्यांच्या हक्काचं स्थान, समानता आणि सन्मान प्राप्त करता यावा..

हा प्रवास सोपा नाही, पण माझा विश्वास आहे की जेव्हा सरकार आणि समाज संवेदनशीलतेने एकत्र येतात, तेव्हा कुठलीही अडचण मोठी नसते. आपण सर्वजण मिळून नक्कीच या कार्यात यशस्वी होऊ.

@Drvirendrakum13 @rashtrapatibhvn
@socialpwds @MSJEGOI @narendramodi @dhoot_dr

[Prakash W. Kamat @PrakashWKamatPK]

@HemoIndia team
led by President ,HFI @PremroopAlva met Shri.Ramdas Athawale ji. @RamdasAthawale ,MOS,@MSJEGOI
Social justice and Empowerment and requested to extend the Reservation in jobs for Persons with Hemophilia in the Rights of Persons with Disability Act,2016.
The team also gave him an invitation to attend it's “sensitization on hemophilia program” in New Delhi on August 7,2025.

[Prakash W. Kamat @PrakashWKamatPK]

Thank you our South Goa MP Captain Viriato Fernandes @ViriatoFern for taking out time from your busy schedule in New Delhi to attend the @HemoIndia 's sensitisation and awareness programme on Hemophilia blood condition, for MPs.
We @GoaHemophilia
appreciate your concern for disability community including Hemophilia persons. Let me put it on record that in our telephonic conversation when i extended to you the invitation for this meeting, and briefed you about Hemophilia situation in the country where intermittent shortage of precious medicines has been a issue, you showed serious interest and
assured to help HFI in any way you can at any time. You even offered to meet Union Health and Welfare Ministry authorities if it could help. Thank you Sir🙏
@PremroopAlva @mumbai_chapter @goadisability
@discommgoa @rahulgandhi @hasibaamin @sidkuks @grpawaskar @nagvekarvishant @sagarjawdekar @bhaangarbhuin @thegoanonline @Navhind_Times @RadheshVarty @SaritaChef @HarshalKale @SaritaChef
@rajeshaggarwal
@pib_MoSJE @dip_goa

[Kiran Avashia @kianmovigmailc1]

Thank You,@PRupala @PremroopAlva ,@dinesh wadhadia,

[Prakash W. Kamat @PrakashWKamatPK]

Yesterday on the Doctor's day Hemophilia Federation India @HemoIndia and Coordination committee of Kerala chapters honoured Dr Rahul U R ,State Nodal Officer, National Health Mission, who has become instrumental in bringing a vast change in the lives of Hemophilia patients in Kerala thru adoption of new policies and technologies.👍🙏
@PremroopAlva @GoaHemophilia @AmitGhayal3 @kavthankara

[Premroop Alva @PremroopAlva]

A Health Technology Assessment (HTA) committee led by ICMR for non-factor therapy. It was inspiring to interact with the Director of ICMR and see top doctors and patient organizations come together to drive change. A big step forward for healthcare in India! #ICMR #HemoIndia

[Prakash W. Kamat @PrakashWKamatPK]

*Representation on Disability and Intersectional Social Justice Concerns for Inclusion in the Upcoming Caste Census 2025–26*
Submitted by: Jitendra Kumar Soni, Convenor, Divyang Forum – 2023
02.05.2025
To
@HMOIndia, Office of the Registrar General
and Census Commissioner of India, and Other Concerned Authorities

I. Subject
Urgent Representation on Disability and Intersectional Social Justice Concerns for Inclusion in the Upcoming Caste Census 2025–26 or Beyond – Legal, Institutional, Statistical, and Accessibility-Based Reforms.

India’s upcoming Caste Census presents a historic opportunity to rectify persistent exclusion and underrepresentation of persons with disabilities (PwDs), particularly those from SC, ST, OBC, religious minorities, and marginalized regions.

Despite the enactment of the Rights of Persons with Disabilities Act, 2016, and India’s obligations under the UNCRPD, the 2011 Census failed to provide disaggregated, accurate data on PwDs, limiting rights-based governance and equitable service delivery.

III. Legal and Constitutional Grounds
Constitutional Mandates: Articles 14, 15, 16, 17, 38, and 41

Statutory Mandates: Sections 24 and 25 of the RPwD Act, 2016

International Treaties: UN Convention on the Rights of Persons with Disabilities (UNCRPD), SDGs (Goals 1, 3, 4, 8, 10, 17)

IV. Key Gaps in Previous Census Exercises
No cross-tabulation of disability with caste, gender, religion, income, education, or location.

Exclusion of institutionalized and homeless PwDs.

Inaccessible enumeration tools (lack of Braille, Sign Language, screen reader-friendly formats).

Stigma-induced underreporting among SC/ST/OBC and minority communities.

Non-recognition of multiple disabilities or severity categories.

No consultation with Disabled People’s Organizations (DPOs).

Absence of grievance redressal mechanisms for enumeration errors.

V. Recommendations
A. Enumeration Reforms
Cross-Tabulation Dimensions:

Disability × Caste

Disability × Religion

Disability × Gender

Disability × APL/BPL Status

Disability × Education/Occupation/Geography

Disability Classification Enhancements:

Multiple disabilities

Severity scales (mild to profound)

Inclusion of rare and psychosocial conditions

Accessible Enumeration Toolkit:

Braille forms, large print, sign language support

Audio-visual aids, pictorial tools

Digital interfaces for screen readers

Enumerator Training:

Disability sensitization

Sign language basics

Inclusive communication skills

B. Institutional Reforms
Formation of Disability Census Advisory Committees (State-wise)

Inclusion of DPOs in questionnaire design and SOP preparation

Establishment of a Disability Census Task Force under ORGI

C. Grievance Redressal
Real-time complaint reporting (online/offline)

District-level redressal with mandatory response timelines

D. Data Protection and Oversight
Encryption and anonymization of disability data

Privacy measures in line with UNCRPD Article 31

Independent oversight through designated Ombudsman

VI. Charter of Broader Demands
Formal recognition of intersectional disability-caste discrimination

Creation of a Monitoring Unit under ORGI

Increased funding for research, surveys, and assistive tech

Amendments to RPWD Rules and the Census Act for inclusive enumeration principles

VII. Concluding Request
We urge that the MoHA, ORGI, DEPwD, and other authorities including your Commission act with urgency to:

Incorporate the above recommendations into the upcoming Census 2025–26

Ensure compliance with constitutional and international obligations
Acknowledge this representation within two working days.
Provide an Action Taken Report (ATR) within 15 days

Submitted by:
@jitendrsoni2018
Citizen with Locomotor Disability, Representatives of Divyang Community in India,
Convenor, Divyang Forum – 2023
Email: [email protected]
Phone: [phone]
Address: 49/19, Rabindra Sarani, Rishra, Hooghly, West Bengal – 712248
@FirstSutraFdn
@SanjibDash76

[Ashutosh Singhal @Sugamyata]

@sureshmeghvi @AmbashtaPP @PrakashWKamatPK @rajeshaggarwal @Drvirendrakum13 @RamdasAthawale @blvermaup @PMOIndia @narendramodi @narendramodi_in @rashtrapatibhvn @VPIndia @the_hindu @timesofindia Today, I requested @rajeshaggarwal sir to take urgent action to resolve complaints registered on the Sugamya Bharat App. Till now, not a single complaint has been resolved, making the app ineffective in the core purpose. @IASassociation @ShashiTharoor @HMOIndia @IndianExpress