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Box 1 Key recommendations

From: Impact of the COVID-19 pandemic on access to the cerliponase alfa managed access agreement in England for CLN2 treatment

Identify specific vulnerability by cross-functional experts in the disease and communicate to families as soon as possible

Quickly clarify any contradictory general Government advice

Tailor advice to family units, not just patients

Designate support services as essential

Re-evaluate the advantages and disadvantages of the one-parent rule