Here is information provided by other websites and organizations for additional resources about Rett syndrome:
Rettsyndrome.org has a mission to accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity. Rettsyndrome.org also supports families affected by Rett syndrome and raises awareness of this important but relatively little known disease, according to their website at rettsyndrome.org.
Rettland Foundation provides resources and support to help families interested in participating in clinical trials. www.rettland.org
All families are eligible to receive travel reimbursement while participating in the Rett-002 study. The Rettland Foundation will administer funds to reimburse families for reasonable costs incurred.*
*Please note that all claims and associated receipts will need to be reviewed and approved prior to reimbursement. No guarantee of full reimbursement is made.
ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world, according to their website. The service is supported by the National Institutes of Health.
ClinicalTrials.gov currently lists over 212,000 studies with locations in all 50 US states and in 193 countries. To view the Rett-002 study on clinicaltrials.gov, please click here.
A Participant’s Guide to Drug Research in Rett Syndrome
For information on drug research in Rett syndrome, please click here.