We seek to provide accurate and credible information about Orphan Diseases to both patients and families. Health outcomes for our communities can improve when diverse elements of health systems come together.
Our objective is to keep adding to the body of knowledge available and make it easy for patients and doctors to understand what needs to be done.
In addition, we will also detail patient stories and encourage the setting up of support groups for patients to reach out and form communities of care. One of the advantages of technology is that it allows people from distant geographies to converge as if they were in the same city.
The effort made by patients and caregivers will help get the message out and include those who have felt left out until now.
Credible information and stories of patients coping with the problems they face will go a long way in building support infrastructure and policy initiatives over the long-term.
Why do you need a Clinical Geneticist?
Patient Support Groups
Patient support groups are important for advocacy, activism and even pushing key research forward. In Europe and the United States, patient support groups have played a key role in bringing in new drugs and treatment.
Patient Stories, Voices
While we may have enough clinical information about rare diseases, it is equally important to listen to the life stories of people with rare diseases. Life stories are patient voices of what it is like to live with a rare disease and face everyday challenges.
News and Events
We design and implement informative and easy-to-comprehend health literacy material in print and digital media for health literacy programs, campaign and events.
We collaborate with patient advocacy groups, government agencies, CSR teams of healthcare- related companies, foundations, poets, writers, visual and performing artists, animators, designers, filmmakers to help generate awareness of autism and rare/neglected diseases.
Patients / Families
As healthcare advances, we harness the power of digital media and tools to enable informed choices for patients and families. We provide:
- Disease specific information for patients and parents, caregivers to familiarize themselves with the medical aspect of the condition
- Information about the primary clinician for each disease and which other specialists will be needed in future?
- Type of hospitals that treat specific diseases
- Where can we locate geneticists and diagnostic labs?
- What are the routine lab tests and procedures required for this disease?
- Are there any patient groups for the disease in India whom patients and parents can reach out to?
- List of medications needed to treat each specific disease and pharma companies that offer these
- Information on diet and physical activity
- How will the disease impact the child/adult’s life and the life of the family and siblings?
- Can the patient go to school/college/work?
- Handling depression among patients and families – help with psychological counselling and therapy
Living with the Disease
One of the problems that patients face is the low awareness of the disorders and the problems involved at every stage from testing to treatment
There is the need for counselling and helping patients come to terms with their diagnosis.
Caregivers also have to be commended for their patience and the work they do to help patients lead as normal a life as possible