Mission of IRSF:
Indian Rett Syndrome Foundation is a national association of Parents, Families, Doctors, Scientists, Health professionals and care takers of children with Rett syndrome and was established on 27th January, 2010. The mission of IRSF is
- To identify people with Rett syndrome in India. India has largest population in world and we expect a large number of patients affected with Rett syndrome.
- To counsel & educate families & doctors on the management of Rett syndrome.
- To unite and help parents, families, caregivers, friends, people with Rett and professionals by creating a strong, supportive community by sharing information, news and research about Rett syndrome, so that they can understand and can work together for the care of these children and their families.
- To help in improving the quality of life of with all those affected with Rett syndrome by proving support, information, services and practical help required by the families.
- To raise public and professional awareness and understanding of Rett Syndrome by collecting and providing correct information describing diagnosis, causes, therapies, research and other aspects of this disorder, training for scientific and health care personnel and distribution of educational material about Rett syndrome to families, doctors and the general public of India.
Become a member: This will strengthen this cause at national and International levels
Encourage others to join and to form help groups with the parents and professionals as partners
Participate or help in organizing Awareness symposiums, trainings and other programs
Initiate and develop facilities in your own region to educate people about this disorder
Sponsor a child’s treatment, therapist’s training or a school’s infrastructure/facilities
Donate for the care and welfare of these children and their families
We invite you all (who love and care these “Silent Angels”) to become members and give your support and help, so that these Angels can have an improved quality of life. Please come and join us to strengthen this network for these Angels. Your contribution in terms of your support and help will help in strengthening this network and in building up a strong and active national body.
Board Members:
Founder and Honorary Member:
Dr. Rajni Khajuria
E-mail: khajuria@rettsyndrome.in rajni.khajuria@gmail.com
Trustee:
Mr. Surender Singh
E-mail:ssingh@rettsyndrome.in
Treasuer:
Mr. Hem Raj Rattan
E-mail:hrattan@rettsyndrome.in rattan.hemraj@gmail.com
Executive Members:
Mr. Anup Singh: Meerut
E-mail:anupsingh@rettsyndrome.in
Dr. Mandira Gunjiyal: Dehradun E-mail:mgunjiyal@rettsyndrome.in sgunji2000@gmail.com
Mrs. Jyoti Malhotra: Delhi(West) E-mail:jyotiirsf@gmail.com
Dr. Lilly Ganju: Delhi(South) E-mail: lganju@rettsyndrome.in lganju@rediffmail.com
Mr. Umesh Kumawat: Jaipur E-mail:ukumawat@rettsyndrome.in umesh02964@rediffmail.com
Mrs. Uma Pandey: U.P(East) E-mail:pandeysn76@yahoo.in
Mrs. Kavita V.D Murugan: Chennai
Advisory Board:
The members in this board consist of National and International scientists, clinicians, therapists, parents, researchers, and other healthcare professionals who have interest and involved in the management and care of the Rett syndrome children.
National Advisors:
Dr. Madhulika Kabra
(All India Institute of Medical Sciences, New Delhi)
Dr. Neerja Gupta
(All India Institute of Medical Sciences, New Delhi)
Dr. Sheffali Gulati
(All India Institute of Medical Sciences, New Delhi)
Dr. Manju Ghosh
(All India Institute of Medical Sciences, New Delhi)
Dr.Savita Sapra
(All India Institute of Medical Sciences, New Delhi)
Dr. Rajni Khajuria
(All India Institute of Medical Sciences, New Delhi)
Dr. V.K Paul
(All India Institute of Medical Sciences, New Delhi)
Dr. Veena Kalra
(Indraprastha Apollo Hospitals, New Delhi)
Dr. I.C Verma
(Sir Ganga Ram Hospital, New Delhi)
Dr. Ratna Puri
(Sir Ganga Ram Hospital, New Delhi)
Dr. Seema Kapoor
(Maulana Azad Medical College, New Delhi)
Dr. Sumita Danda
(Christian Medical College, Vellore)
(CH(SC),Affiliated to Armed forces Medical College, Pune)
International Advisor:
Dr. Helen Leonard
(Telethon Institute for Child Health Research, University of Western Australia, Australia)
Dr. Alan K Percy
(Civitan International Research Center, University of Alabama at Birmingham)
Dr. Sarojini Budden
(Legacy Emanuel Children's Hospital, Portland, OR)
Dr. Carolyn N Schanen
(Alfred I. duPont Hospital for Children/Nemours Children's Clinic, University of Delaware)
Dr. SakkuBai Naidu
(Kennedy Krieger Institute, Baltimore, MD)
Dr. David M Katz
(Case Western Reserve University, Cleveland, OH)
Dr. Janine M. LaSalle
(UC Davis School of Medicine, Davis, CA)
Mrs. Paige Nues
(Director, Family Support, International Rett Syndrome Foundation)
Dr. Eric Smeets
(University Hospital Maastricht, The Netherland)
Dr. Angus Clarke
(Cardiff University, Wales, UK)
Dr. Leopold Curfs
(Director Governor Kremers Centre, University Hospital Maastricht, The Netherland)
Mr. Gerard Nguyen
(President, Rett syndrome Europe)
Dr. Kees Van Roozendaal
(University Hospital Maastricht, The Netherland)
Peter Huppke
(Georg August University Göttingen, Germany)
Dr. Laurent Villard
(INSERM U910 – Marseille, France)
We are looking forward for executive members (parents/relatives/caregivers) from other states of India, who wish to come forward to give their helping hand and support to other families living in their neighbourhood or nearby region. If you want to join the family of IRSF please send your application at the following address:
E-mail:admin@rettsyndrome.in