RESOURCES
Practical guides for families
These resources help patients and families prepare for consultations, organise medical records and navigate ongoing care.
Available resources
Preparing for a rare-disease consultation
What to bring, what to ask and how to prepare for a specialist appointment.
How to organise medical records
A simple system for keeping track of diagnoses, tests, prescriptions and reports.
Questions to ask after a diagnosis
A printable list of questions to discuss with your care team.
Understanding genetic testing
What genetic testing involves and what results may mean for your family.
What rehabilitation can do
How rehabilitation supports function, independence and quality of life.
A caregiver checklist
Practical steps for supporting a family member while caring for yourself.
Government rare-disease resources
Programmes and schemes that may provide financial and practical support.
Patient organisations
Connecting with support groups and organisations for specific conditions.
Medical review
Each resource is reviewed before publication. Resources that contain medical information carry a review date and name a medical reviewer.
Information on this website is for education and care navigation and does not replace consultation with a qualified healthcare professional.
Contact ACCORD
If you need help finding the right resource, please contact us.
ACCORD Asha
13, Gaushala Rd, Ansal Villas
Satbari
New Delhi 110074
India
Medical emergency warning: ACCORD's website and contact channels are not emergency services. For a medical emergency, contact your nearest emergency department or emergency service.