The first ever 4 city Indo – USA endeavor to create awareness for better Fragile X care in India by The Fragile X Society, India in association with UC DAVIS MIND Institute, USA; along with AIIMS, New Delhi; Institute of Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi; Delhi Chapter, Indian Academy of Pediatrics; NIMHANS Bangalore; Indira Gandhi Institute of Child Health,Bangalore; Centre for Human Genetics, Bangalore; Indian Academy of Pediatrics Chapter of Neuro-developmental Pediatrics, Mumbai and New Horizons Health and Research Foundation,Mumbai; was successfully held in Delhi, Bangalore, Kolkata and Mumbai. The Indo- USA symposium provided a never before platform to expand and develop relationships between Indian and American researchers and clinicians. It was an avenue to exchange knowledge between Indian and American professionals about the latest evidence-based treatments for Fragile X- associated Disorders. Further it also engaged the patient community to expand the reach of the Fragile X Society India.
The Fragile X Syndrome is a rare condition, which is caused by a change in a gene that is inherited at the time of conception. It causes a wide range of cognitive impairment, from mild learning disabilities to severe intellectual disabilities (ID) that can impact individuals and families in various ways. Fragile X Syndrome is the most common known cause of autism or "autistic-like" behaviors. Approximately 1 in 3,600 to 4000 among males and 1 in 4000 to 6000 among females are affected by FXS. Usually, males are more severely affected by this disorder than females. Therefore it is vital to spread awareness among the medical fraternity especially pediatricians and gynecologists’ as well as parents and the couples planning to have a child, so that children with Fragile X Syndrome are detected early in life.
The medical symposium was attended by eminent doctors and healthcare experts like Dr. Anupam Sachdeva, MD, Director Institute of Child Health, SGRH, President, Indian Academy of Pediatrics (IAP), New Delhi; Dr. Ishwar Verma,FRCP, Director, Institute of Genetics and Genomics, Sir Ganga Ram Hospital, New Delhi; Dr. Satish Girimaji, Professor, Dept of Child and Adolescent Psychiatry, NIMHANS, Bangalore, Dr. Swathi Shetty, Molecular Geneticist, Centre for Human Genetics, Bangalore ; Dr. Gautam Ghosh, President, West Bengal Academy of Paediatrics; Dr. Jai Ranjan Ram, Senior Consultant Psychiatrist, Apollo Gleneagles Hospital, Founder, Mental Health Foundation, Kolkata; Dr. Kheya Ghosh Uttam, Secretary, West Bengal Academy of Pediatrics; Dr. Samir H. Dalwai, MD, DCH, FCPS, DNB, LLB, New Horizons Child Development Centre & Research Foundation, Neuro Developmental Clinic, Lokmanya Tilak Municipal General (Sion) Hospital and Medical College; President, Indian Academy of Pediatrics, Mumbai; Dr. Randi Hagerman, MD, Medical Director, UC Davis MIND Institute, USA; Mr. Robert Miller, International Patient Advocacy Organisational Consultant; Suma Shankar, MD, PhD, Precision Genomics Director, UC Davis, California, USA; Flora Tassone, PhD, Investigator, UC Davis MIND Institute, UC Davis, California, USA; Stephanie Sherman, PhD, Professor, Emory University, Atlanta, USA ; Anne Skomorowsky MD, Asst. Professor, Columbia University Medical Center, New York, USA and Ms. Shalini Kedia, Founder Member and Chairperson, The Fragile X Society, India.
Ms. Shalini Kedia, Founder Member and Chairperson, The Fragile X Society, India shared that, “as per the world wide statistics, India has over 4, 00,000 affected individuals. The Fragile X Society, India has taken the herculean task to dispel ignorance amongst a large population in India.”
The Indian Academy of Pediatrics (IAP), the apex association of pediatric discipline in India has come forward to prepare guidelines for a better Fragile X Syndrome care in India. Extending his support to the cause, Dr. Anupam Sachdeva, MD, Director Institute of Child Health, SGRH,New Delhi and National President, Indian Academy of Pediatrics (IAP) shared that, “cases of Fragile X Syndrome and its associated disorders are mostly not reported in India. Therefore, IAP is preparing guidelines for management of the syndrome, as it is necessary to create awareness among the doctors who will manage the children or individuals affected with FXS and its associated disorders.”
The Fragile X Society, India promotes public and professional awareness among the parents and eminent doctors all over India. It extends help to families with affected children in terms of literature, guidance and a deep understanding of how Fragile X can impact families. It holds seminars, workshops and conferences in various parts of the country. Through its efforts, the organization has been able to reach out to 400 families which required help and timely intervention. The Fragile X Society, India had partnered with UC DAVIS MIND Institute, USA which provided knowledge in advancement of diagnosis, management and therapy of Fragile X Syndrome and its associated disorders.
Dr. Randi Hagerman,MD, Medical Director, UC Davis MIND Institute ,USA shared that, “Its has been our constant endeavour to create a better life for individuals affected with Fragile X Syndrome and its associated disorders. We are happy to be associated with The Fragile X Society, India for spreading awareness about Fragile X Syndrome and its associated disorders in India. We have been training doctors, psychologists in fragile X, autism and other neuro-developmental disorders through our International Training Program in Neuro developmental Disorders (ITPND).” The Fragile X Society,India was founded in 2003 by Ms. Shalini Kedia. It is a non-profit society based in Mumbai and it has successfully created a network with parents and eminent doctors all over India.