Due to the rarity of the disorder many GP’s and healthcare professionals will not have heard of Rett syndrome which often results in the parents feeling like they are the experts. The Rett Syndrome National Best Practice Management and Care Guidelines equips both families and healthcare professionals with vital information about the progression of the disease and the important interventions and treatments that can improve quality of life.
Funded by Jeans for Genes this has become an essential information resource for both families and medical professionals that contains the accumulated learning about the treatment and management of Rett syndrome. This helps to ensure that when healthcare providers come across those affected by Rett syndrome, they are aware of best practice even though they might not ever have met someone with the disorder before.
You can download or view a copy of the Guidelines below.