The broad objectives of the society are:
Provide dietary and medical support to celiac disease (CD) patients and their families: To improve the quality of care and life of such patients from all walks of life, especially from lower socio-economic strata is the major objective of the society. This will be achieved by creating a patient cell where the patients with CD will be provided constant guidance and motivation for dietary compliance. Committed parents, doctors & dieticians would be our key supporters and workers. After they are empowered with the knowledge to deal with dietary issues such as preparation of wholesome diets, preparing/ procuring flours, preparing recipes they would form patient help groups.
With the support of psychologists, dieticians and doctors, these self help groups would further be able to reach out to less privileged or under privileged parents and patients.
In terms of medical support, the society is not intended to be just a conglomerate of gastroenterologists. It would be a multi – sectarian platform. Various other specialties such hematology, dermatology, endocrinology would also associated with the society providing much needed all round support. In addition, people from processing industry, agriculture economists interested in wheat technology, adolescent counselors, eminent philanthropist and committed bureaucrats would also be a part of the team.
Increase and improve access to early and affordable diagnosis of celiac disease: The delay in diagnosis of CD is an important issue. The awareness regarding the disease is poor even amongst doctors. Preparation of a training module, having awareness workshops for medical students, paramedical, medical staff is part of the mandate.
Development of indigenous rapid diagnostic kit is already on the way. The society would help in providing these to the peripheral centers and linking them to an endoscopy facility at a district level through the involvement of the regional committees. The society would interact with the government to integrate this with NRHM program.
Create a non-stigmatized awareness of celiac disease among various sections of society:This will be achieved by providing education and disseminating information to the society regarding the disease through printed and audiovisual materials. An expert panel or a contact group of resource persons and shall give updated information pertaining to CD. A registry of doctors in periphery as well as tertiary care will be available.
Regular seminars, workshops and interactive sessions with various health care providers such as doctors, nurses and volunteers would be conducted to extend information to the training groups. Brochures & pamphlets in Hindi, English and regional languages would be prepared for facilitating answers to FAQs & helping dissemination of information on CD.
Create platforms and events where individuals with celiac disease can interact with each other as well as with non-diseased mainstream society: The society will facilitate formation of such support groups by making a registry of all CD patients and be a platform where patients with CD can meet each other. Special events such as Celiac day would be planned by the society to help towards this. Schemes such as “Adopt a child” for celiac support would be launched. The society will assist this through dedicated telephone helpline, access to nutritionists, doctors, psychologist, etc. A dedicated Website, email and a dietetic and food helpline will further enhance the activities of the society. Some of the features of the website would the following:
- Frequently asked questions
- Information regarding work shops, group meetings
- Net working with other celiac support groups organizations
- Celiac disease links/ celiac new letters and magazines/ Associated diseases and disorders
- Adopt/Support a child
- List of doctors doing work for celiac disease
- Celiac disease related psychological problems in young children and adolescents websites relating to celiac blogs/ Gluten free forum/club of parents
Advocate for legislative and non-legislative improvements in food processing, labeling & marketing that provide greater access to safe gluten free foods. This would be achieved by having representation of the society on both government and industry committees relating to gluten free standard labeling. The need to have gluten free labeling on all food packaging is critical. There is a huge need among children suffering with CD to have a variety of gluten free snacks and other ready to eat foods which are really scarce. To fill this critical gap, the society shall persuade the food industry to take action in this regard and would request the Government to provide subsidy to such products which are suitable for patients with CD. Foods labeled as gluten free must contain no detectable gluten (less than 20 ppm) and/or malted gluten-containing cereals or their products.
Make latest research on celiac disease available for public access on a website and provide news and updates on celiac disease:
This will be achieved by making the society a level playing field for contacting experts, brainstorming and newer ideas suitable to Indian needs. Improved understanding of the molecular basis of the disease has enabled researchers to suggest alternatives novel treatments to blunt the immune stimulatory effects of gluten. CMEs would be conducted regularly to update the doctors on the latest on CD research.
Raise funds through Government and other agencies for activities of the society and to provide support for celiac disease related events and advocacy:
This will be achieved by creating a large corpus and extending financial support to patients who are needy and poor. This fund raising will be done from Government support, donations from patients and public.
The CSO will strive for Tax exemption, School admission/fee benefits for CD patients and subsidies for food manufacturers who come up with low cost gluten free foods (flour, bread, biscuits, cookies, porridge, and candies). Government support would be sought to provide gluten free cereals at low cost from public distribution systems such as kendriya bhandars.
Media support: It is essential to have the support of media in our endeavor. To create an awareness in the public and to create a partnership of the patients with the society in such a way that each and every celiac disease patient’s special needs are accepted and provided for in schools, restaurants and offices.
