The Canadian Organization for Rare Disorders is pleased to “partner” with the PARTNERS initiative in this attachment. As you can see, the goal of the initiative is to engage with the rare disease patient community to design and develop new diagnostic and therapeutic interventions. The Network is seeking funding through SPOR (Strategy for Patient-Oriented Research), a coalition of federal, provincial and territorial funders. We believe this Network can help to advance the goals of Canada’s Rare Disease Strategy, released this May by CORD.
An Introduction to PARTNERS short slide show.
Register Now: Canada's Most Effective Patient Training Event. Canadian Expert Patients in Health Technology Conference in Toronto
Date: November 7 - 8 Location: Hyatt Regency Toronto, 370 King St W, Toronto, ON REGISTER HERE Statement of Need We are living in a rapidly evolving healthcare environment that offers significant opportunities and challenges to stakeholders. In particular, the development and availability of innovative health technologies, including therapies, devices, and medical procedures, are transforming once fatal diseases to chronic conditions, reducing the impact of physical and mental challenges, and significantly improving quality of life for patients and families. Patient advocates and patient organizations are playing key roles in the design and development of new therapies, and nowhere is this more evident than in the area of rare diseases where one third to one half of the innovative or breakthrough therapies are designated as orphan drugs. Public health programmes and private insurers are raising concerns about rising healthcare costs and budget impacts. Indeed, we are reaching a critical juncture (perfect storm) with innovations plus incremental improvements in current products meeting up with increasing demand from a population that is aging with more complex illnesses, aware of options, and desirous of having a say in healthcare decision making. In all sectors, patient-centred care and patient engagement are increasingly recognized as not only desirable but also essential to health policy and decision-making. However, not all patients are adequately represented or adequately prepared to participate in all phases of drug development and access, and indeed the opportunities for engagement are perhaps exceeding the capacity of the patient community to take fulsome advantage. Patient groups range from large, well-resourced multi-stakeholder not-for-profit or charitable organizations to small, family-based, single-cause, volunteer-run groups that may not be officially registered. The latter are especially predominant in the rare disease space. *Draft Agenda* Objectives Topics 1. Canada’s Strategy for Rare Diseases • Update on 5 Pillars: Diagnosis and Prevention, Expert Care, Community Support, Access to Therapies, Research • Progress on Ontario’s Strategy for Rare Diseases • Centres of Expertise: Platform for diagnosis, patient registries and databases, best practice care and management of drug therapies, coordination of community-based support, research initiatives 2. New Health Technologies • Emerging technologies in diagnostics (newborn screening, genome sequencing, “human phenotype ontology” • Orphan drug pipeline • Advances in transplantation therapy: bone marrow and stem cell transplant, gene modifications • Developments in precision/personalized therapies • Biosimilars • Repurposing drugs 3. Current Issues in Drug Access • Special Access Programme and Advanced Access Programmes • Managed access (aka Coverage with Evidence Development), Risk Sharing, Post-Market Monitoring • Proposed FPT Access to (Expensive) Drug for Rare Disorders • Engaging with pCPA • New Guideline from PMPRB • Private Drug Insurance 4. National Pharmacare • Convergence or Disparity: Comparison of Federal, Provincial, and Territorial Drug Coverage Programmes • What was Heard: Feedback from House of Commons Standing Committee on Health • Building Blocks of National Pharmacare Roadmap to Excellence in Drug Access • Roadmap to Excellence in Drug Access Educate: Inform patients and patient advocates about innovations in health technologies and emerging issues that affect access to therapies, diagnostics, and devices for rare diseases and beyond Enquire: Consult with patients, patient advocates, and patient organizations to ensure that the patient perspective is central in health policy and health-related decision making at all levels from individual to systems Empower: Provide training, support, and resources to increase capacity of patient organizations and patient advocates to advocate effectively on behalf of themselves and other patients at all levels of healthcare decision making Engage: Actively facilitate and provide channels and tools for patients and patient advocates to meaningfully engage with all other stakeholders in all processes of the development, review, use, and monitoring of health technologies and related services CORD is offering a small travel bursary to patient group representatives to help offset the cost of travel. Apply at here: https://www.surveymonkey.com/r/2016expertpatientapplication REGISTER HERE