Hemophilia Welfare Society Karachi, Karachi (2025)

28/10/2025

📢 𝐂𝐨𝐦𝐩𝐫𝐞𝐡𝐞𝐧𝐬𝐢𝐯𝐞 𝐖𝐨𝐫𝐤𝐬𝐡𝐨𝐩 𝐨𝐧 𝐇𝐞𝐦𝐨𝐩𝐡𝐢𝐥𝐢𝐚 & 𝐌𝐮𝐬𝐜𝐮𝐥𝐨𝐬𝐤𝐞𝐥𝐞𝐭𝐚𝐥 (𝐌𝐒𝐊) 𝐇𝐞𝐚𝐥𝐭𝐡

🩸 𝑬𝒎𝒑𝒐𝒘𝒆𝒓𝒊𝒏𝒈 𝑯𝒆𝒂𝒍𝒕𝒉𝒄𝒂𝒓𝒆 𝑷𝒓𝒐𝒇𝒆𝒔𝒔𝒊𝒐𝒏𝒂𝒍𝒔 𝒇𝒐𝒓 𝑩𝒆𝒕𝒕𝒆𝒓 𝑷𝒂𝒕𝒊𝒆𝒏𝒕 𝑶𝒖𝒕𝒄𝒐𝒎𝒆𝒔

The 𝑯𝒆𝒎𝒐𝒑𝒉𝒊𝒍𝒊𝒂 𝑭𝒐𝒖𝒏𝒅𝒂𝒕𝒊𝒐𝒏 𝒐𝒇 𝑷𝒂𝒌𝒊𝒔𝒕𝒂𝒏 (𝑯𝑭𝑷), in collaboration with the Federation of Hemophilia (WFH), successfully organized a national-level workshop titled “Hemophilia and Musculoskeletal Health: A Comprehensive Workshop” on Saturday, October 11, 2025, at Indigo Heights Hotel, Lahore.

This specialized workshop brought together Orthopaedic surgeons and Physiotherapists from across Pakistan to enhance their understanding of MSK management in people with bleeding disorders.

The sessions covered a wide range of key topics, including:
✅ Overview of Hemophilia and MSK Health
✅ Risk Assessment for Bleeding Complications
✅ Haematological Pre-operative Evaluation
✅ Physical Therapy and Non-invasive Modalities
✅ Surgery and Rehabilitation Techniques
✅ Multidisciplinary Approaches in Patient Care

Key sessions were led by eminent experts including Prof. Dr. Muhammad Tariq Sohail, Dr. Muhammad Hanif, Dr. Fariha Shams, and Dr. Ayesha Imran, with international contributions from Ms. Carla Daffunchio, Mr. Cesar Haddad, Dr. Salim Fourmas, and Ms. Rana Saifi, Regional Manager, WFH.

The workshop provided a valuable platform for learning, collaboration, and hands-on demonstrations, strengthening national capacity for comprehensive hemophilia care and improving musculoskeletal health outcomes for patients. This National Level workshop was funded by WFH from their PACT Program for Pakistan.

🤝 HFP extends sincere gratitude to all speakers, participants, and partners for making this initiative a success in advancing specialized care for people with bleeding disorders in Pakistan.

25/10/2025

Listen to Raheel Ahmed Khan, a hemophilia patient, patient activist, and Founder & CEO of the patient-led organization, Hemophilia Welfare Society Karachi Pakistan.

As a person living with hemophilia and an activist, I have personally experienced that hemophilia, a lifelong bleeding disorder, demands immediate medical attention to stop bleeds, reduce joint damage, and prevent life-threatening complications. For someone with hemophilia, every delay in treatment can mean the difference between mobility and disability, between safety and risk. This condition requires not only medical care but also a healthcare system built on compassion, preparedness, and accessibility.

As a hemophiliac and an activist, I raise my voice for all individuals and parents affected by bleeding disorders, calling for the replication and expansion of dedicated hemophilia wards in every district-level government hospital across Pakistan. This is not merely a call; it is an urgent healthcare need and a practical solution that can transform lives by ensuring accessible, timely, and dignified care for everyone living with hemophilia.

Across Pakistan, there remains a clear gap in clinical hematology services and a lack of accessible treatment and care for people with hemophilia and other rare bleeding disorders, especially in rural and underserved areas. Modern treatment requires trained healthcare providers, accurate diagnosis, and continuous access to therapy, all of which are still limited in Pakistan's public health system.

To ensure timely and equitable care, it is crucial that dedicated hemophilia wards be established in every district-level government hospital, both provincial and federal. These wards can serve as essential centers for managing bleeding episodes promptly and safely, preventing long-term joint damage and disability. They can provide care aligned with modern treatment protocols, train healthcare providers in hemophilia management and emergency response, and ensure a sustainable model of treatment within the public system.

In the absence of such specialized government services, patient–parent–based organizations like HWSK are working tirelessly, despite limited resources, to fill this gap through public–private partnerships and community-led initiatives. HWSK continues to strive for a future where every person with hemophilia receives care without fear, delay, or discrimination.

Through these efforts, hemophilia wards have been successfully established at Civil Hospital Sanghar and Abbasi Shaheed Hospital Karachi. Both serve as models of collaboration, demonstrating how patient-led organization and government institutions can bring specialized care closer to patients’ homes. These wards are more than treatment facilities; they are symbols of hope, dignity, and resilience for families who have long endured silent struggles.

I am deeply grateful to the Sindh Government and the World Federation of Hemophilia (WFH) for their sincere efforts in bringing light to long-neglected gaps in care, for adding color and hope where there was once only struggle. Yet, while these initiatives have made treatment more reachable, they are only the beginning. Much more must be done to ensure that every person, in every district, has equal access to timely, dignified, and comprehensive care.

SINDH Blood Transfusion Authority
Health & Population Welfare Department, Sindh
Sindh Health Department
Novo Nordisk Haemophilia Foundation
Hemophilia Foundation - Pakistan
Ministry of National Health Services, Regulations & Coordination Islamabad

21/10/2025

Benefits of an Established Hemophilia Ward at Civil Hospital Sanghar in Partnership with Hemophilia Welfare Society Karachi Pakistan سول ہسپتال سانگھڑ میں HWSK کے اشتراک سے قائم کردہ ہیموفیلیا وارڈ کے فوائد

In a heartfelt interview, Dr. Aftab Azam, Civil Surgeon of Civil Hospital Sanghar, spoke about the daily struggles faced by hemophilia patients and their families many of whom had to travel nearly 300 kilometers from Sanghar and its surrounding villages to Karachi for emergency care during painful bleeding episodes, both internal and external.

Dr. Aftab highlighted how this journey was not only physically exhausting but also emotionally and financially devastating for patients and their parents. He emphasized that hemophilia is a lifelong condition that demands immediate access to specialized treatment and care.

Expressing his appreciation, Dr. Aftab praised the HWSK for its vision, mission, and dedicated services that made it possible to establish the Hemophilia Ward at Civil Hospital Sanghar under a public–private partnership.

He noted that the newly established Hemophilia Ward has brought immense relief to patients, who can now receive timely treatment, factor infusions, and counseling close to their homes — saving lives and preventing long-term disabilities.

Dr. Aftab further emphasized the importance of setting up hemophilia wards at the district level in public hospitals across Sindh, stating that such facilities are crucial for early intervention, patient rehabilitation, and long-term disease management.

He expressed gratitude to HWSK for its continuous advocacy and tireless efforts to ensure that no hemophilia patient suffers due to lack of access or awareness.

“This initiative reflects true compassion and commitment. The Hemophilia Welfare Society Karachi has set a remarkable example of how collaboration between government and patient-led organizations can transform lives.” — Dr. Aftab, Civil Surgeon, Civil Hospital Sanghar

Together, we move closer to a future where every district hospital in Sindh can provide comprehensive hemophilia care — ensuring treatment closer to home, dignity, and hope for every patient.

Ministry of National Health Services, Regulations & Coordination Islamabad
SINDH Blood Transfusion Authority
Health & Population Welfare Department, Sindh
Sindh Health Department
Dr Ruth Pfau Civil Hospital Karachi
Sindh Government
Novo Nordisk Haemophilia Foundation
Hemophilia Foundation - Pakistan
World Federation of Hemophilia
Mera Sanghar Official

18/10/2025

محکمۂ صحت حکومتِ سندھ نے ہیموفیلیا ویلفیئر سوسائٹی کراچی (HWSK) کے اشتراک سے ہیموفیلیا ٹریٹمنٹ سینٹر، ناظم آباد میں سال 2025–2026 کے لیے سالانہ ہیموفیلیا پروفیلیکسیس تھراپی کا باقاعدہ افتتاح کیا۔
🇵🇰

اس موقع پر ڈاکٹر درناز جمال، سیکریٹری سندھ بلڈ ٹرانسفیوژن اتھارٹی (SBTA)، مہمانِ خصوصی کے طور پر شریک ہوئیں۔ یہ موقع پاکستان میں ہیموفیلیا اور دیگر خون بہنے کی بیماریوں میں مبتلا افراد کے لیے پائیدار اور جامع علاج کی جانب ایک اور نمایاں سنگِ میل ثابت ہوا۔

تقریب میں 42 رجسٹرڈ بچوں کو نان فیکٹر اور کلاٹنگ فیکٹر پروفیلیکسیس تھراپی کی پہلی سالانہ خوراک دی گئی۔ ان میں دو بچے ہیموفیلیا بی (Factor IX deficiency) کے مریض ہیں، جن میں سے ایک پاکستان کا پہلا ایسا بچہ ہے جو ہیموفیلیا بی کے ساتھ دل کی بیماری میں بھی مبتلا ہے۔

یہ اقدام حکومتِ سندھ کے 2022 کے تاریخی فیصلے کا تسلسل ہے — جو پاکستان میں اپنی نوعیت کا پہلا قدم تھا — جس کے تحت ہیموفیلیا اور خون بہنے کی دیگر بیماریوں کے مریضوں کو عوامی فنڈز سے پروفیلیکسیس تھراپی فراہم کی جا رہی ہے۔

راحیل احمد، بانی و سی ای او ہیموفیلیا ویلفیئر سوسائٹی کراچی (HWSK) نے وزیرِ صحت، سیکریٹری صحت، اور ڈاکٹردرناز جمال کا شکریہ ادا کرتے ہوئے کہا کہ:

“ڈاکٹر درناز جمال واقعی ہیموفیلیا اور بلیڈنگ ڈس آرڈر کمیونٹی کے لیے ایک فرشتہ اور انکی ملکہ ہیں۔ اُن کی شفقت، قیادت اور انتھک محنت نے اُن خاندانوں کے لیے امید کو حقیقت میں بدل دیا جو کبھی ناقابلِ علاج خون بہنے کی بیماریوں اور مستقل معذوری کے خوف میں زندگی گزار رہے تھے۔”

راحیل احمد نے مزید کہا:

“آج ہم 1,455 رجسٹرڈ مریضوں میں سے 42 بچوں کے لیے سالانہ پروفیلیکسیس ڈوز کا آغاز کر رہے ہیں۔ یہ 42 بچے 342 رجسٹرڈ بچوں میں سے ہیں۔ ہر مریض اس زندگی بچانے والے علاج کا حقدار ہے، اور ہمیں یقین ہے کہ حکومت کے مستقل تعاون سے مزید مریض سالانہ بنیادوں پر اس پروگرام میں شامل کیے جائیں گے۔”

انہوں نے اس عزم کا اعادہ کیا کہ HWSK ایک مریضوں کی زیر قیادت ادارہ ہونے کے ناطے علاج کی رسائی، آگاہی، اور صحت کے شعبے میں تربیت کے فرق کو کم کرنے کے لیے سرگرم ہے — خصوصاً ضلعی سطح کے اسپتالوں میں جہاں ہیماٹولوجی سروسز محدود ہیں۔
اپنےہیموفیلیا وارڈز اور ٹریٹمنٹ سینٹرز کے ذریعے HWSK جامع اور کثیرالجہتی نگہداشت کے طریقہ کار، پروٹوکولز، اور رجسٹریشن معیار کو ورلڈ فیڈریشن آف ہیموفیلیا (WFH) کے مطابق نافذ کر رہا ہے۔

مہمانِ خصوصی ڈاکٹر دورِ ناز جمال، سیکریٹری SBTA نے اپنے خطاب میں کہا:

“ہیموفیلیا اور بلیڈنگ ڈس آرڈرز کے لیے حکومتِ سندھ کا یہ اقدام بصیرت، ہمدردی اور وژن کی بہترین مثال ہے۔ یہ صرف صوبائی نہیں بلکہ قومی کامیابی ہے، جو یہ ظاہر کرتی ہے کہ پاکستان کے صحت کے نظام میں نایاب بیماریوں کو بھی مساوی ترجیح دی جانی چاہیے۔ ایسے اشتراک سے ہم قیمتی زندگیاں بچا رہے ہیں، وقار بحال کر رہے ہیں، اور مثبت تبدیلی کو فروغ دے رہے ہیں۔”

اختتامی کلمات میں راحیل احمد نے اس عزم کو دہرایا کہ HWSK سندھ میں کسی بھی مریض کو بغیر علاج یا بغیر مدد کے نہیں چھوڑے گا ہر ممکن علاج و معالجہ کی سہولیات کو یقینی بنانے کی جدوجہد جاری ہے۔
انہوں نے اُمید ظاہر کی کہ حکومت کے مسلسل تعاون سے علاج کی رسائی میں توسیع اور صوبے کے ہیموفیلیا نگہداشت کے ڈھانچے کو مزید مضبوط کیا جائے گا

18/10/2025

The Health Department, Government of Sindh, in partnership with the Hemophilia Welfare Society Karachi (HWSK), inaugurated the Annual Hemophilia Prophylaxis Therapy 2025–2026 at the Hemophilia Treatment Center, Nazimabad Karachi Part 9

18/10/2025

The Health Department, Government of Sindh, in partnership with the Hemophilia Welfare Society Karachi (HWSK), inaugurated the Annual Hemophilia Prophylaxis Therapy 2025–2026 at the Hemophilia Treatment Center, Nazimabad Karachi Part 8

18/10/2025

The Health Department, Government of Sindh, in partnership with the Hemophilia Welfare Society Karachi (HWSK), inaugurated the Annual Hemophilia Prophylaxis Therapy 2025–2026 at the Hemophilia Treatment Center, Nazimabad Karachi Part 7

18/10/2025

The Health Department, Government of Sindh, in partnership with the Hemophilia Welfare Society Karachi (HWSK), inaugurated the Annual Hemophilia Prophylaxis Therapy 2025–2026 at the Hemophilia Treatment Center, Nazimabad Karachi Part 6

18/10/2025

The Health Department, Government of Sindh, in partnership with the Hemophilia Welfare Society Karachi (HWSK), inaugurated the Annual Hemophilia Prophylaxis Therapy 2025–2026 at the Hemophilia Treatment Center, Nazimabad Karachi Part 5

18/10/2025

The Health Department, Government of Sindh, in partnership with the Hemophilia Welfare Society Karachi (HWSK), inaugurated the Annual Hemophilia Prophylaxis Therapy 2025–2026 at the Hemophilia Treatment Center, Nazimabad Karachi Part 4

18/10/2025

The Health Department, Government of Sindh, in partnership with the Hemophilia Welfare Society Karachi (HWSK), inaugurated the Annual Hemophilia Prophylaxis Therapy 2025–2026 at the Hemophilia Treatment Center, Nazimabad Karachi Part 3

18/10/2025

The Health Department, Government of Sindh, in partnership with the Hemophilia Welfare Society Karachi (HWSK), inaugurated the Annual Hemophilia Prophylaxis Therapy 2025–2026 at the Hemophilia Treatment Center, Nazimabad Karachi Part 2

Hemophilia Welfare Society Karachi

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