Rare Diseases Survey

Excellence in Paediatrics is seeking to raise awareness about lysosomal storage disorders, a form of rare disorder that general pediatricians may encounter as frontline doctors.

The ability to accurately suspect rare diseases and correct presumptive diagnosis's is a critical factor for early diagnosis, which is why we are holding a survey to gain an insight into the level of awareness that currently exists, potential knowledge gaps and the preferred type of clinical support.

Results from this survey and our rare diseases initiative will help us:

1. Develop 60 minute e-learning courses on treatable lysosomal storage disorders, which will be accessible via this website and accompanied with downloadable educational material
2. Deliver a lysosomal storage disorder session at the upcoming Excellence in Paediatrics 2012 conference. The session will focus on how primary care paediatricians can use new support resources to identify prospective patients for specialist referrals
3. Create a special edition e-paper focusing on treatable rare diseases

Take our survey now to ensure that we develop support for needs that match those of pediatricians around the globe.