Support group for MPS & Gaucher - About Us
Fetal Care Research Foundation inaugurated a support group for children affected with an inborn error of metabolism called Mucopolysaccharidoses on 8th August 2003.
The support group also caters to children suffering from other Lysosomal Storage Disorders (LSDs) such as Gaucher, Pompe and Fabry diseases for which Enzyme Replacement Therapy is now available.
Benefits of becoming a member of the Support Group
1. Better understanding of the disorders by the family members.
2. Confirmation of diagnosis free of cost.
3. Cost free or subsidized comprehensive health care by a team of specialists like geneticist, pediatrician, orthopedic surgeon, ophthalmologist, ENT specialist, cardiologist, pulmonologist, physiotherapist, speech therapist, dentist, psychologist and social worker to get over the physical and mental sufferings experienced by these children and the family members from time to time.
4. Creating awareness about these disorders in their environment such as school, neighbourhood and relatives so that they are accepted with more compassionate feelings.
5. Creating special employment giving due considerations to the physical disabilities of the affected.
6. Easy approach for financial assistance from both the Government and Corporate bodies to build a corpus fund / or provide medical insurance to cover the frequent medical expenses of the affected.
7. Prenatal diagnosis of the subsequent pregnancies to rule out the disorder and thereby assuring the family of a normal child.
8. Emotional support to the affected families by bringing them to gether, and enabling interactions among themselves.
9. Easy access to communication with other support groups for MPS around the world to keep abreast with the recent advancements in the treatment and care such as ERT & advanced surgical care etc., and avail the maximum benefits.
The incidence of MPS disorders is not known in Indian population. Considering the size of our population, many cases might have been missed due to the difficulties in identifying the problems and confirmation of diagnosis. MPS Support Group hopes to pick up the maximum number of cases possible and be of help to the affected. Supportive care would indeed make a difference in the life of the affected and help them live their lives and not let the disease overshadow their existence.