Webinar (existing): activities and training programs for health care Advocacy and Awareness Facilitating relationships between stakeholders professionals, researchers, and policymakers Literature (existing): • Establishing relationships with stakeholders Participating in standardized patient programs Advocating for research • • • Advocating for legislation • Education Advocacy and Awareness Starting awareness campaigns • Literature (existing): Webinar (existing): Webinar (existing): Helping to develop educational material/training Advocating for research Advocating for improved quality of life • • • programs for patients/families Starting awareness campaigns (e.g., fundraisers) Advocating for education • • Advocating for clinics and patient care services • Webinar (existing): Conferences and workshops Facilitating Advocacy and • patients’ individual Organizing and sponsoring formal educational Literature (existing): Awareness efforts • activities and training programs for health care Participating in conferences and workshops • professionals, researchers, and policymakers Webinar (existing): Conferences and workshops Participating in standardized patient programs Volunteering at conferences Literature (existing): • • Participating in conferences and workshops • Advocacy and Awareness Patient care and support Organizing conferences • Webinar (existing): Literature (existing): Funding conferences • Advocating for research Providing social support • • Starting awareness campaigns (e.g., fundraisers) Patient care and support • Patient organization development Literature (existing): Conferences and workshops Literature (existing): Providing social support • Literature (existing): Establishing patient organizations Providing financial support • • Participating in conferences and workshops Providing clinical care support • • Webinar (existing): Presenting at conferences Patient organization development • Sitting on organizing committees Literature (existing): • Providing advice on develop patient organizations • Patient care and support Fundraising to support further development of the • Literature (existing): organization Providing social support • Monitoring own clinical care • Webinar (existing): Providing clinical care support • Patient organization development Literature (existing): Establishing patient organizations • Clinical trials Research Research Research Literature (existing): Literature (existing): Literature (existing): 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 • • •
Webinar (existing): • Facilitating relationships between stakeholders • Establishing relationships with stakeholders Education Literature (existing): • Helping to develop educational material/training programs for patients/families 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 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 activities and training programs for health care professionals, researchers, and policymakers • Participating in standardized patient programs Advocacy and Awareness Webinar (existing): • 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 Advocacy and Awareness Literature (existing): • Advocating for research • Advocating for legislation • Starting awareness campaigns 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 Clinical trials Research Literature (existing): • Participating as subjects in studies outside of clinical trials • Setting research priorities • Initiating research studies • Providing assistance to researchers conducting Research Literature (existing): • Initiating research studies • Providing assistance to researchers conducting studies • Leading research • Participating in research organizations/networks Research Literature (existing): • Participating as subjects in studies outside of clinical trials • Setting research priorities • Initiating research studies • Providing assistance to researchers conducting studies
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