Useful Scientific Links

Batten Disease

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: admin@bdfa-uk.org.uk

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/