1. RARE BEST PRACTICES COURSE ROMA (Feb 23-24 2015) Euro-HSP Madrid 2015 May 30 Jean Bénard May 31, GA 2015 Madrid

2. Deals with RD as a global health issue,  Deals with RD as a global health issue,  Exploiting and integrating contributions from all EU Members and other world areas (Caucasus, Europe, America, Oceania, PAHO/WHO)  Will identify additional research needs to further improve clinical practice. Euro-HSP RARE BEST PRACTICES( RBP) Platform

3.  Aims at improving clinical management of rare disease patients and narrowing the existing gap in quality of health care among EU member states as well as in other countries.  This will be achieved by collecting, evaluating and disseminating best practices as well as sharing knowledge.  The ultimate impact of the RARE-Bestpractices project should be an improvement of health outcomes and quality of life for rare diseases patients, through a reduction of inequalities in health care and an increased equity of access to better diagnostics and therapeutics at EU level. Euro-HSP RARE BEST PRACTICE (RBP) Project

4. Document with recommendations, aimed to improve the quality of health, based on systematic reviews of scientific studies combined with a consideration of harms and benefits of different care options  Document with recommendations, aimed to improve the quality of health, based on systematic reviews of scientific studies combined with a consideration of harms and benefits of different care options  Supplemented with expertise and experience from care providers and care users.  Dutch guideline for guidelines, 2012, based on IOM Euro-HSP RARE BEST PRACTICE (RBP) Guideline

5. An algorithm integrating numerous criteria has been built that yields a chek-list enabling to appraise a document proposed as a guideline........................................................................................................................... Domain 1: Scope and Purpose.................................................................................................... Domain 2: Stakeholder Involvement.......................................................................................... Domain 3: Rigour of Development............................................................................................. Domain 4. Clarity of Presentation............................................................................................... Domain 5.Applicability............................................................................................................... Domain 6: Editorial Independence........................................................................................... Overall Guideline Assessment RARE BEST PRACTICE (RBP) Agree II Instrument

6. EFNS guidelines on the Molecular Diagnosis EFNS guidelines on the Molecular Diagnosis of Ataxias and Spastic Paraplegias of Ataxias and Spastic Paraplegias T. Gassera et al. European Journal of Neurology 2010, 17: 179–188 based on the expertise of Physiotherapists of all Europe: Austria, Belgium, France, Hungary, Israël, Italy, Norway, UK, Switzerland RARE BEST PRACTICE (RBP)

7.  This guidance is targeted at paediatric physiotherapists involved in the management of children with neurological conditions where botulinum toxin (BTX-A) may be an appropriate adjunctive treatment.  To date there are no standardised pathways or consensus of practice for providing BTX-A injection services for children. Current provision and practice varies from one locality to another throughout the UK.  Nationally, paediatric physiotherapists have expressed a need for evidence/consensus-based guidance as there is little specific advice regarding physiotherapy intervention following BTX-A treatment. EVIDENCE-BASED GUIDANCE FOR PHYSIOTHERAPISTS The use of Botulinum Toxin in Children with Neurological Conditions RARE BEST PRACTICE (RBP)