It has been brought to our attention that children who have been diagnosed with #Battensdisease, which has very similar symptoms to ALD, are unable to access treatment which would improve their quality of life. The treatment called Cerliponase Alfa has been developed and it has shown to slow down the progression of this cruel disease. Unfortunately, NICE is currently recommending that the drug is not funded by the NHS.
So please take the time to sign this petition and help others with #raredisease #collaboration #support
www.change.org/p/nhs-england-help-fund-the-only-treatment-for-children-with-fatal-batten-diesease... ...
change.org
NHS England: Help Fund the Only Treatment for Children with fatal Batten Diesease