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 • Conferences and workshops Literature (existing): Funding conferences • 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 Reimbursement decision-making Literature (existing): Literature (existing): Establishing patient organizations Directly consulted during review process • • Membership on advisory/decision-making committee • Preparing a patient submission Regulatory decision-making • Literature (existing): Literature (proposed): Reporting adverse events Assuring reimbursement of off-label drug use • • Reimbursement decision-making Literature (existing): Providing information for preparation of evaluation • report Directly consulted during review process • Membership on advisory/decision-making committee • Providing feedback on evaluation report and/or • proposed recommendations Preparing a patient submission • Presenting views during committee meeting • Literature (proposed): Providing input at the earliest stages of the HTA • process Presenting a summary of patient submissions to • reimbursement evaluation committees Provide input into any re-assessments of benefits and •
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 Reimbursement decision-making Literature (existing): • Providing information for preparation of evaluation report • Directly consulted during review process • Membership on advisory/decision-making committee • Providing feedback on evaluation report and/or proposed recommendations • Preparing a patient submission • Presenting views during committee meeting Literature (proposed): • Providing input at the earliest stages of the HTA process • Presenting a summary of patient submissions to reimbursement evaluation committees • Provide input into any re-assessments of benefits and Patient care and support Literature (existing): • Providing social support Patient organization development Literature (existing): • Establishing patient organizations 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 Reimbursement decision-making Literature (existing): • Directly consulted during review process • Membership on advisory/decision-making committee • Preparing a patient submission Literature (proposed): • Assuring reimbursement of off-label drug use
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