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Euro-HSP RARE Best Practices: Improving Healthcare for Rare Disease Patients

This course explores best practices in the management of rare diseases and aims to improve healthcare outcomes for patients. The RARE-Bestpractices project collects, evaluates, and disseminates best practices, with the goal of reducing inequalities in healthcare and improving access to better diagnostics and therapeutics at the EU level.

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Euro-HSP RARE Best Practices: Improving Healthcare for Rare Disease Patients

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

  2. Euro-HSP RARE BEST PRACTICES( RBP) Platform • 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.

  3. Euro-HSP RARE BEST PRACTICE (RBP) Project • 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.

  4. Euro-HSP RARE BEST PRACTICE (RBP) Guideline • 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

  5. RARE BEST PRACTICE (RBP) Agree II Instrument 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

  6. RARE BEST PRACTICE (RBP) EFNS guidelines on the MolecularDiagnosis of Ataxias and SpasticParaplegias T. Gasseraet 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

  7. RARE BEST PRACTICE (RBP) EVIDENCE-BASED GUIDANCE FOR PHYSIOTHERAPISTS The use of BotulinumToxin in ChildrenwithNeurological Conditions • This guidance istargetedatpaediatricphysiotherapistsinvolved in the management of childrenwithneurological conditions wherebotulinumtoxin (BTX-A) maybe an appropriateadjunctivetreatment. • To date there are no standardisedpathways or consensus of practice for providing BTX-A injection services for children. Current provision and practice varies from one locality to anotherthroughout the UK. • Nationally, paediatricphysiotherapists have expressed a need for evidence/consensus-based guidance as thereislittle • specificadviceregardingphysiotherapy intervention following BTX-A treatment.

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