Useful Scientific Links
1) Batten Disease Support and Research Association (BDSRA) – United States of America (USA)
Contact Details:
Webstie: https://bdsra.org/
Facebook Page: https://www.facebook.com/bdsra
Twitter: https://twitter.com/bdsra
Contact URL: https://bdsra.org/contact-us/ (contact form)
2) Batten Disease Family Association (BDFA) – United Kingdom (UK)
Contact Details:
Website: http://www.bdfa-uk.org.uk/
Fundraising Facebook page: https://www.facebook.com/fundraisingforbdfa/?ref=br_rs
Contact URL: http://www.bdfa-uk.org.uk/contact/
YouTube Channel: https://www.youtube.com/user/bdfauk
Twitter : https://twitter.com/BattenDiseaseUK
Instagram: https://www.instagram.com/battendiseaseuk/
Facebook Page : https://www.facebook.com/bdfauk
Email: [email protected]
3) National Organisation for Rare Disorders (NORD) – United States of America
Contact Details:
Website: https://rarediseases.org/
Facebook Page: https://www.facebook.com/NationalOrganizationforRareDisorders
Contact URL: https://rarediseases.org/contact-us/ (contact form)
4) UCL (University College London) – United Kingdom(UK)
Contact Details:
Website: http://www.ucl.ac.uk/ncl/index.shtml
5) BATCure – European Union (EU)
Contact Details:
Website: http://www.batcure.eu/home_page
6) Batten Disease Support and Research Association The Australian Chapter of BDSRA – Australia (AU)
Contact Details:
Website: http://www.battens.org.au/
Contact URL: http://www.battens.org.au/contact-us
Facebook Page: https://www.facebook.com/AustralianBDSRA
7) Global Genes
Contact Details:
Website: https://globalgenes.org/
Twitter: https://twitter.com/globalgenes
Contact URL: https://globalgenes.org/contact
Facebook Page: https://www.facebook.com/globalgenes
Linkedin: https://www.linkedin.com/company/2099041
Pinterest: https://www.pinterest.com/globalgenes/
YouTube Channel: https://www.youtube.com/user/globalGenesProject
8) Lysosomal Disease NZ – New Zealand (NZ)
Contact Details:
Website: http://www.ldnz.org.nz/home
Facebook Group: https://www.facebook.com/groups/172221112849202/
9) Batten Disease International Alliance
Contact Details:
Facebook Page: https://www.facebook.com/Batten-Disease-International-Alliance-211718735534062/
10) Rare Disease UK
Contact Details:
Website: https://www.raredisease.org.uk/
11) NORD (National Organisation for Rare Disorders)
Contact Details:
Website: https://rarediseases.org/