Islamabad: Medical experts, researchers, academics and representatives of civil society have called for greater awareness, early diagnosis, improved research and stronger patient support for Spinal Muscular Atrophy (SMA) in Pakistan.
The call was made at the Pakistan SMA Symposium 2026, organised by STRIVE – Strive Eradication of Disability Foundation, at Serena Hotel Islamabad. The event brought together leading doctors, professors, researchers, medical specialists, academics, volunteers, civil society representatives and families affected by SMA.
The symposium focused on awareness about SMA, timely diagnosis, modern treatment options, genetic screening, medical research and the challenges faced by patients and their families. It also served as a forum for doctors and researchers to discuss the future of SMA care and research in the country.
Chief Health Sector Reforms Unit (HSRU) Khyber Pakhtunkhwa Dr Syed Ejaz Ali Shah, Chairman Zakat and Ushr Council Khyber Pakhtunkhwa Imtiaz Khan and Chairman STRIVE Muhammad Yasir Khan were among the prominent participants. Doctors, researchers, representatives of civil society, SMA-affected families and people from different walks of life also attended.
A significant aspect of the gathering was the participation of professors, heads of departments and academic experts from various universities of Islamabad and Rawalpindi. They shared their views on SMA, genetic disorders, research, new developments in treatment and the future direction of medical science.
The symposium also had an international academic and research dimension, with researchers working on SMA at the global level joining the event. Experts and researchers from Poland, the United Kingdom and other European countries participated in the discussions.
Participants noted that the presence of foreign researchers provided an opportunity to connect Pakistan’s ongoing efforts with international research and developments in the field of SMA. They underlined the need for stronger cooperation between Pakistani institutions and international research communities to improve knowledge, diagnosis and care for people living with rare diseases.
Addressing the symposium, Dr Syed Ejaz Ali Shah paid tribute to the parents and families of SMA patients for their resilience and continued struggle. He said families striving for the better lives and futures of their children deserved recognition and appreciation.
Dr Shah said awareness about complex and rare diseases such as SMA should go hand in hand with effective support for patients and their families. He stressed the importance of collective efforts involving healthcare professionals, families, government institutions and other stakeholders.
Speaking on the occasion, STRIVE Chairman Muhammad Yasir Khan said SMA was not only a medical condition but a wider struggle that required joint efforts by patients, parents, doctors, researchers, government institutions, media, civil society and social organisations.
He said STRIVE was working to spread awareness about SMA across the country, promote early diagnosis, encourage research and help create better pathways for patients to access treatment and essential healthcare facilities.
Yasir Khan also announced that STRIVE would organise a major SMA Summit on October 30 and 31, 2026, at Tulip Marquee Islamabad. He said the proposed summit would be one of the largest gatherings of its kind in Pakistan and would bring patients, parents, doctors, medical specialists, national and international researchers, policymakers, universities, civil society organisations, volunteers and other relevant stakeholders together under one roof.
During the symposium, speakers discussed the symptoms of Spinal Muscular Atrophy, the need for timely diagnosis, genetic screening, modern treatment, patient care, research and future strategies for addressing SMA in Pakistan.
Doctors and researchers said early diagnosis, proper medical guidance and access to modern treatment could play an important role in improving the quality of life of children and individuals affected by SMA. They also highlighted the need for wider public awareness so that families could recognise the condition and seek suitable medical advice at an early stage.
Participants observed that Pakistan needed further work in public awareness, medical facilities, genetic diagnosis, research and policymaking related to SMA. Strengthening these areas, they said, could help provide better support to children living with the condition and their families.
The symposium also stressed the importance of stronger coordination among universities, healthcare institutions, researchers, policymakers and international organisations. Participants said such collaboration could help Pakistan benefit from global scientific developments while also encouraging local research into rare diseases.
At the conclusion of the event, participants expressed their commitment to expanding awareness, research and advocacy for the rights and needs of people affected by SMA. They emphasised the need to build stronger links between government institutions, universities, the medical community, media, civil society, patients and their families.
The organisers said the Pakistan SMA Symposium 2026 was not merely a single event but an important step towards creating a collective voice and a sustained movement for greater awareness, research, early diagnosis and improved support for SMA patients in Pakistan.
The gathering also reflected growing efforts by medical professionals, researchers, families and civil society organisations to bring rare diseases onto the national health agenda and promote a more informed, inclusive and supportive healthcare environment for affected individuals and their families.
