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Policy and Patient Advocacy - important aspects of Pulmonary Fibrosis

Policy and Patient Advocacy - important aspects of Pulmonary Fibrosis

22-03-2021

Activities for the benefits of patients

Overall health care policy and Patient Advocacy are important parts of being a patient. Patient Advocacy regards any activity which ultimately benefits a patient an it applies to a wide range of issues such as caregiving for an individual patient in the hospital system, to policy developers, to government groups that develop legislation to improve systems and processes and to providers of medical and other treatments that are necessary for the particular disease.

An important part of the Virtual PF patient summit this April is the track dealing with policy and advocacy.

We present three round tables regarding

  • 'Supporting newly diagnosed patients' with the objectives to explore the experiences of patients around diagnosis, showcase Best Practice and identify the unmet needs for all involved and explore experiences around Patient Support Groups & Specialist Nurses.
  • Involvement of rare disease patient representatives in medical congresses, explaining the benefits of involvement from both a Patient and Health Care perspective and the current legal & legislative environment; outlining examples of successful involvement and solutions as well as negative experiences and looking into solutions to the challenges that currently impact stakeholders and event organisers.
  • Presentation of the 2030 EU Agenda on rare diseases, examining the status of new and ongoing EU policies that impact pulmonary fibrosis patients, providing Case Studies on EU funded initiatives in which the EU-IPFF are members and examining strategic partnerships opportunities that will improve EU Rare Disease Policy.
EU IPFF

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