Resources
PMSF
PMSF (Phelan-McDermid Syndrome Foundation) has a mission to improve the quality of life of people affected by Phelan-McDermid syndrome worldwide by providing family support, accelerating research, and raising awareness.
More information can be found at www.PMSF.org
CureSHANK
CureSHANK is a research advocacy organization expediting life-changing therapies for Phelan-McDermid syndrome (which is caused by pathogenic changes to the SHANK3 gene) by funding targeted research and holding scientific meetings to connect diverse stakeholders.
More information can be found at www.cureshank.org
ClinicalTrials.gov
ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical research studies. The service is supported by the National Institutes of Health.
You can find our entries at: ClinicalTrials.gov
Sponsor
This clinical study is sponsored by Neuren Pharmaceuticals, a biopharmaceutical company headquartered in Camberwell, Australia, that focuses on the development of therapies for neurodevelopmental disorders. Current programs are evaluating therapies for neurodevelopmental disorders such as Phelan-McDermid, Angelman, and Pitt Hopkins syndromes.
For more information on current studies, please visit ClinicalTrials.gov.
For more information on Neuren Pharmaceuticals, visit neurenpharma.com.
Reimbursement Information
PMSF will administer funds to support families for their participation in this Phelan-McDermid syndrome study.
If you are interested in receiving travel support toward participation in the study or would like further information, please contact the PMSF directly via travelprogram@pmsf.org
To ensure that PMSF is able to support future families in this trial, it may not be possible to approve 100% of your estimated expenses. Thank you for your understanding and dedication to advancing research for Phelan-McDermid syndrome.