An IWMD clinical registry is being developed by a team of patient representatives, specialist IWMD clinicians, staff from NHS England (NHSE) and wider clinical and patient working groups. The registry will be hosted at Guys and St Thomas NHS Foundation Trust (GSTT) and Evelina Children’s Hospital, on behalf of NHSE and ARDEN GEM.
The IWMD Patient Registry can be contacted via email: [email protected]
ALEX-TLC
The leukodystrophy charity, ALEX, offer information and support to families affected by Leukodystrophies.
Additional information can be found on their webpage.