Advocating for research Advocating for drug access/coverage • • Webinar (existing): Starting awareness campaigns (e.g., fundraisers) Advocating for research • • Organizing and sponsoring formal educational Advocating for legislation • • activities and training programs for health care Webinar (existing): Conferences and workshops professionals, researchers, and policymakers Literature (existing): Advocating for improved quality of life • Participating in standardized patient programs Participating in conferences and workshops Advocating for education • • • Webinar (existing): Advocating for clinics and patient care services • Volunteering at conferences Facilitating Advocacy and Advocacy and Awareness • • patients’ individual Literature (existing): Awareness efforts Advocating for drug access/coverage Patient care and support • Webinar (existing): Literature (existing): Conferences and workshops Advocating for research Providing social support Literature (existing): • • Starting awareness campaigns (e.g., fundraisers) Participating in conferences and workshops • • Patient organization development Organizing conferences • Literature (existing): Funding conferences Conferences and workshops • Literature (existing): Establishing patient organizations • Participating in conferences and workshops Patient care and support • Webinar (existing): Literature (existing): Presenting at conferences Providing social support • • Sitting on organizing committees Providing financial support • • Providing clinical care support • Patient care and support Literature (existing): Patient organization development Providing social support Literature (existing): • Monitoring own clinical care Providing advice on develop patient organizations • • Webinar (existing): Fundraising to support further development of the • Providing clinical care support organization • Patient organization development Literature (existing): Establishing patient organizations • Regulatory decision-making Literature (existing): Reporting adverse events • Obsolescence/ Research Research Research replacement with a new Literature (existing): Literature (existing): Literature (existing): therapy Participating as subjects in studies outside of clinical Initiating research studies Participating as subjects in studies outside of clinical • • • trials Providing assistance to researchers conducting trials • Setting research priorities studies Setting research priorities • • Initiating research studies Leading research Initiating research studies • • • Providing assistance to researchers conducting Participating in research organizations/networks Providing assistance to researchers conducting studies • • • studies Disseminating research-related information Leading research • • Leading research Literature (proposed): Funding research • •
Webinar (existing): • Organizing and sponsoring formal educational activities and training programs for health care professionals, researchers, and policymakers • Participating in standardized patient programs Advocacy and Awareness Literature (existing): • Advocating for drug access/coverage Webinar (existing): • Advocating for research • Starting awareness campaigns (e.g., fundraisers) Conferences and workshops Literature (existing): • Participating in conferences and workshops Webinar (existing): • Presenting at conferences • Sitting on organizing committees Patient care and support Literature (existing): • Providing social support • Monitoring own clinical care Webinar (existing): • Providing clinical care support Patient organization development Literature (existing): • Establishing patient organizations Regulatory decision-making Literature (existing): • Reporting adverse events • Advocating for research • Starting awareness campaigns (e.g., fundraisers) Conferences and workshops Literature (existing): • Participating in conferences and workshops Webinar (existing): • Volunteering at conferences Patient care and support Literature (existing): • Providing social support Patient organization development Literature (existing): • Establishing patient organizations • Advocating for drug access/coverage • Advocating for research • Advocating for legislation Webinar (existing): • Advocating for improved quality of life • Advocating for education • Advocating for clinics and patient care services • Facilitating patients’ individual Advocacy and Awareness efforts Conferences and workshops Literature (existing): • Participating in conferences and workshops • Organizing conferences • Funding conferences Patient care and support Literature (existing): • Providing social support • Providing financial support • Providing clinical care support Patient organization development Literature (existing): • Providing advice on develop patient organizations • Fundraising to support further development of the organization Obsolescence/ replacement with a new therapy Research Literature (existing): • Participating as subjects in studies outside of clinical trials • Setting research priorities • Initiating research studies • Providing assistance to researchers conducting studies • Leading research Research Literature (existing): • Initiating research studies • Providing assistance to researchers conducting studies • Leading research • Participating in research organizations/networks • Disseminating research-related information Literature (proposed): Research Literature (existing): • Participating as subjects in studies outside of clinical trials • Setting research priorities • Initiating research studies • Providing assistance to researchers conducting studies • Leading research • Funding research
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