RARE DISEASE DIAGNOSIS
Looking for a diagnosis?
When symptoms stay unexplained, the search for an answer can take years and many specialists. ACCORD Asha helps organise that search — clinical assessment, coordinated testing and a clear picture for your treating doctor.
When the search for a diagnosis stalls
Rare diseases affect fewer than 1 in 2,000 people individually, but together they affect millions. Because each condition is uncommon, most clinicians will see very few cases in a career — and the diagnostic path becomes long, fragmented and exhausting for families.
ACCORD Asha exists so that this search is not carried out alone. We bring the pieces of an evaluation into one place and keep the family informed at every step.
Signs a structured evaluation may help
- Symptoms remain unexplained after multiple specialist visits
- Several family members are affected by a similar condition
- A suspected condition is repeatedly ruled out without an alternative
- Developmental, neurological or metabolic concerns without a clear cause
- Investigations have been done in different hospitals and never reviewed together
What a diagnostic evaluation at ACCORD involves
Clinical review
A careful history, examination and review of everything already done elsewhere — so nothing is repeated unnecessarily.
Coordinated testing
Targeted investigations, including genetic testing where appropriate, arranged and tracked so results are not lost between centres.
A clear handover
A structured summary for your treating physician or specialist, who makes the formal diagnosis and plans treatment.
How to start
You can contact ACCORD directly, or ask your treating doctor to refer you. Bringing existing reports, test results and a written timeline of symptoms makes the first review far more useful.
- Gather all previous reports, scans and test results
- Write a short symptom timeline with dates
- Note which family members have similar symptoms
- List current medicines and any allergies
Frequently asked questions
If you or your child have symptoms that have not been explained after visits to several specialists, if multiple family members are affected by a similar condition, or if a suspected condition keeps being ruled out without a clear answer, a structured rare disease evaluation may help. ACCORD Asha coordinates assessment and testing; a formal diagnosis is always made by your treating physician or specialist.
ACCORD Asha can carry out diagnostic evaluation and coordinate testing, including genetic and specialist investigations. We do not issue formal diagnoses ourselves. Our role is to assemble the clinical picture and the investigations so that your treating physician or specialist can reach a diagnosis.
There is no standard timeline. Some conditions are identified within weeks; others take months or years and several rounds of testing. We work to move the process forward as quickly as is safe, while making sure the evaluation is thorough rather than rushed.
An undiagnosed disease programme is a structured pathway for people who remain without a diagnosis after extensive evaluation elsewhere. It brings together clinical review, re-analysis of existing tests, and, where appropriate, broader genetic investigation. See our undiagnosed and complex conditions page.
Related pages
Rare diseases care
How ACCORD supports families living with rare diseases, from diagnosis to long-term care.
Undiagnosed & complex conditions
What to do when extensive evaluation still has not produced an answer.
Genetic counselling
Understanding inheritance, testing options and what results mean for your family.
Medical review
Medical reviewer: To be confirmed before publication — no medical content on this page may go live without human medical review.
Review date: Pending | Next review: Pending
Sources: Content on this page must be verified against Ministry of Health and Family Welfare, ICMR, Department of Health Research, recognised Centres of Excellence, WHO or Orphanet guidance before publication.
Information on this page is for education and care navigation and does not replace consultation with a qualified healthcare professional.
Start a diagnostic enquiry
ACCORD Asha
13, Gaushala Rd, Ansal Villas
Satbari
New Delhi 110074
India
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