Through the years we've come to meet families with #Batten and other lysosomal diseases. Thanks to charity events, we made friends (hello Pierre👋) among this huge loving community who works and acts on behalf of the patients 🧡 #BattenDay2023
#VML
#BDSRA
#BattenDiseaseUK

Hi! I'm Emeline, über lucky aunty to 18-year-old Maëlyn. She has #Batten disease.

#BattenDay2023 is round the corner, so I'll thread what I know about this neurodegenerative disease.

#BDSRA #BattenDiseaseFamilyAssociationUK #VaincreLesMaladiesLysosomales 🧡

Did you know that 5% of people have been impacted by a rare disease?

My niece has #Batten disease: a mutation on CLN3 gene impacted her quality of life.

No cure yet, but a fantastic team of researchers and family associations - VML (https://www.vml-asso.org/) & BDFA (http://www.bdfa-uk.org.uk/)

#RareDiseaseDay