Visiting a Centre of Excellence: what to take and what to ask

Centres of Excellence (COEs) are government-designated hospitals that diagnose and treat rare diseases. A visit to a COE is the first step towards treatment and government support under the National Policy for Rare Diseases. These tips will help you make the most of it.

Before you go

• Find your nearest COE on our COE locator. You can also approach any other COE.
• Call or email the COE before you travel, to book an appointment and ask which department to visit.
• Gather all medical reports: enzyme and genetic test results, scans, prescriptions and discharge summaries, in date order. Take the originals and a set of copies.
• Take the patient’s ID and address proof, and a list of the medicines the patient takes now.
• Write down the symptoms, when they started and how they have changed, and your questions.
• Take someone with you, so that one person can listen while the other takes notes.

Questions to ask at the COE

• Is the diagnosis confirmed, or are more tests needed? Which type of the disease is it?
• Is the disease covered under the National Policy for Rare Diseases, and will you apply for financial assistance for the patient?
• Will you register the patient on the government rare disease portal for crowdfunding and donations?
• What treatment do you recommend, how often is it given, and when can it start?
• Can any of the treatment or check-ups be done closer to home?
• What is the estimated cost of treatment, and what happens if the assistance runs out?
• Should other family members be tested? Can we see a genetic counsellor?
• Which symptoms should we watch for, and whom do we contact in an emergency or between visits?

After the visit

• Ask for copies of everything the COE writes or tests, and keep all reports together.
• Note the names and contact details of the doctors and staff you met.
• Follow up if you have not heard about the financial assistance or the portal listing.
• Register with LSDSS if you have not already, so we can guide you through the next steps. Read our guide to NPRD financial support.

Need help? LSDSS is run by parents and caregivers who have been through this. Message us on WhatsApp at +91 89288 08431, email contactus@lsdssindia.org, or register with LSDSS for free guidance.