Prof. Javed Akram elected as founder President at meeting
held at University of Child Health, Lahore
LAHORE: The first meeting of Pakistan Society for Novel and Rare Diseases (SNARE) was held at Child Health University, Lahore where Professor Javed Akram was elected as the founding president. The Rare Disease Society is a dedicated organization that aims to empower individuals affected by rare diseases, foster awareness, and encourage impactful research to improve the lives of patients and their families.
Group photograph taken at the First Meetting of Pakistan Society for Novel and Rare Diseases held at University of Child Health Lahore shows Prof. Javed Akram, Prof. Masood Sadiq, Prof. Sajid Maqbool, Prof. Aftab Mohsin, Dr. Shela Akram, Prof. Tipu and other participants.
With over 300 million people globally living with one of approximately 7,000 identified rare diseases, this community often feels isolated due to limited public knowledge and support. SNARE mission is to bridge this gap by advocating for policy changes, supporting groundbreaking medical advancements, and creating a platform for those affected to share their stories.
Rare diseases are often underdiagnosed or misdiagnosed due to their unique and complex nature, leading to delays in treatment and care. The Rare Disease Society will actively collaborate with medical professionals, researchers, and policymakers to ensure early and accurate diagnosis, access to life-saving treatments, and equitable healthcare opportunities. It will also prioritize funding and promoting innovative research aimed at uncovering new treatments and potential cures.
Beyond medical efforts, the Rare Disease Society is committed to building a compassionate community where patients and families find emotional and psychological support. Through events, educational campaigns, and partnerships with other organizations, we work to increase public understanding and reduce the stigma surrounding rare diseases.
By joining forces with individuals, healthcare providers, and advocates worldwide, the Rare Disease Society seeks to inspire hope, drive meaningful change, and give a voice to those living with rare diseases. Together, we strive for a future where every individual, regardless of their condition, can lead a fulfilling life.
Dear Professor Javed Akram / Pakistan Society for Novel and Rare Diseases,
Assalam-o-Alaikum,
My name is Khushbu, and I am a 30-year-old mother of four children. I have been diagnosed with a rare autoimmune condition called Pemphigus Vulgaris (PV). The treatment for this disease is very expensive, and unfortunately, my family is struggling financially to bear the cost of medicines and regular care.
I recently contacted the International Pemphigus & Pemphigoid Foundation (IPPF), and they kindly suggested that I reach out to your esteemed society for possible support.
I humbly request your guidance and any possible assistance, whether in the form of financial help, access to low-cost medicines, or information about support programs in Pakistan for rare disease patients.
Your help can make a huge difference in my treatment and in the well-being of my children. I would be very grateful for your kind support.
Warm regards,
Khushbu