{"id":899,"date":"2019-12-11T09:47:09","date_gmt":"2019-12-10T20:47:09","guid":{"rendered":"https:\/\/clladvocates.nz\/?page_id=899"},"modified":"2019-12-16T10:44:39","modified_gmt":"2019-12-15T21:44:39","slug":"cll-horizons-2019","status":"publish","type":"page","link":"https:\/\/clladvocates.nz\/?page_id=899","title":{"rendered":"CLL Horizons 2019"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row row_height_percent=&#8221;0&#8243; override_padding=&#8221;yes&#8221; h_padding=&#8221;0&#8243; top_padding=&#8221;3&#8243; bottom_padding=&#8221;2&#8243; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;4&#8243; column_width_percent=&#8221;100&#8243; shift_y=&#8221;0&#8243; z_index=&#8221;0&#8243; bottom_divider=&#8221;step&#8221;][vc_column column_width_percent=&#8221;100&#8243; position_horizontal=&#8221;left&#8221; position_vertical=&#8221;middle&#8221; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;3&#8243; medium_width=&#8221;0&#8243; mobile_width=&#8221;0&#8243; shift_x=&#8221;0&#8243; shift_y=&#8221;0&#8243; shift_y_down=&#8221;0&#8243; z_index=&#8221;0&#8243; width=&#8221;1\/1&#8243;][vc_custom_heading heading_semantic=&#8221;h1&#8243; text_size=&#8221;h1&#8243;]Highlights from CLL Horizons 2019[\/vc_custom_heading][vc_column_text]<em>CLL Horizons 2019<\/em>\u00a0focused on CLL patient advocacy group models from around the world, what made them work, where improvements could be made, and where the future was heading. There was a lot of discussion on sharing of resources amongst the various groups, so as not to \u201creinvent the wheel\u201d, and you will soon see examples of this here on our site.<\/p>\n<p>Psychosocial support provision, use of social media to communicate among individuals and groups, examples of successful advocacy, and the various ways in which advocacy groups can make positive contributions to research were major components of the formal presentations. There were also several presentations about the current state of the science and medical therapeutics of the disease CLL.<\/p>\n<p>Neil was invited to present the story of a new advocates\u2019 group, on how we\u2019re developing CLLANZ and lessons learned, as well as the future role of the organisation. Click below to view Neil&#8217;s presentation as a PDF.[\/vc_column_text][vc_single_image media=&#8221;753&#8243; media_width_percent=&#8221;100&#8243; media_link=&#8221;url:https%3A%2F%2Fclladvocates.nz%2Fwp-content%2Fuploads%2F2019%2F10%2FNeil_Graham_CLLAN_Presentation.pdf|||&#8221;][vc_separator][uncode_index el_id=&#8221;index-242381&#8243; loop=&#8221;size:10|order_by:date|post_type:post|tags:20&#8243; gutter_size=&#8221;2&#8243; post_items=&#8221;title,text|excerpt|250,link|default|default_size|View slides,media|featured|onpost|original&#8221; screen_lg=&#8221;1000&#8243; screen_md=&#8221;600&#8243; screen_sm=&#8221;480&#8243; single_text=&#8221;lateral&#8221; single_width=&#8221;12&#8243; images_size=&#8221;one-one&#8221; single_image_size=&#8221;4&#8243; single_back_color=&#8221;color-lxmt&#8221; single_overlay_opacity=&#8221;50&#8243; single_text_anim=&#8221;no&#8221; single_overlay_anim=&#8221;no&#8221; single_image_anim=&#8221;no&#8221; single_padding=&#8221;2&#8243; single_title_dimension=&#8221;h4&#8243; single_border=&#8221;yes&#8221;][vc_separator][vc_column_text]<\/p>\n<h4><em>Presentations and videos from the conference<\/em><\/h4>\n<p>These early sessions on foundation learning prepare advocates with understanding of basic CLL biology, patient challenges and current issues to prepare them for more involved discussion, clinical, scientific and advocacy sessions during the conference.<\/p>\n<p>The last two videos in this series are on organisational sustainability, Presentations from new start up and established patient groups frame discussion\u00a0 about organisational sustainability. How do we keep our successful organisations functioning long-term? What are the priorities? How do we best support our communities?[\/vc_column_text][\/vc_column][\/vc_row][vc_row row_height_percent=&#8221;0&#8243; override_padding=&#8221;yes&#8221; h_padding=&#8221;0&#8243; top_padding=&#8221;2&#8243; bottom_padding=&#8221;2&#8243; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;4&#8243; column_width_percent=&#8221;100&#8243; shift_y=&#8221;0&#8243; z_index=&#8221;0&#8243; bottom_divider=&#8221;step&#8221;][vc_column column_width_percent=&#8221;100&#8243; position_horizontal=&#8221;left&#8221; position_vertical=&#8221;middle&#8221; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;3&#8243; medium_width=&#8221;0&#8243; mobile_width=&#8221;0&#8243; shift_x=&#8221;0&#8243; shift_y=&#8221;0&#8243; shift_y_down=&#8221;0&#8243; z_index=&#8221;0&#8243; width=&#8221;1\/1&#8243;][vc_custom_heading heading_semantic=&#8221;h3&#8243; text_size=&#8221;h3&#8243;]CLL 101 &#8211; The Basics, PART 1 &#8211; Lorna Warwick, CEO Lymphoma Coalition.[\/vc_custom_heading][vc_column_text]CLL Horizons 2019, Edinburgh, Foundation Learning, &#8211; Lorna Warwick, CLL Advocates Network, (Past Chair) &amp; CEO of Lymphoma Coalition explains Chronic Lymphocytic Leukaemia[\/vc_column_text][vc_single_image media=&#8221;915&#8243; media_width_percent=&#8221;100&#8243;][vc_separator][\/vc_column][\/vc_row][vc_row row_height_percent=&#8221;0&#8243; override_padding=&#8221;yes&#8221; h_padding=&#8221;0&#8243; top_padding=&#8221;2&#8243; bottom_padding=&#8221;2&#8243; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;4&#8243; column_width_percent=&#8221;100&#8243; shift_y=&#8221;0&#8243; z_index=&#8221;0&#8243; bottom_divider=&#8221;step&#8221;][vc_column column_width_percent=&#8221;100&#8243; position_horizontal=&#8221;left&#8221; position_vertical=&#8221;middle&#8221; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;3&#8243; medium_width=&#8221;0&#8243; mobile_width=&#8221;0&#8243; shift_x=&#8221;0&#8243; shift_y=&#8221;0&#8243; shift_y_down=&#8221;0&#8243; z_index=&#8221;0&#8243; width=&#8221;1\/1&#8243;][vc_custom_heading heading_semantic=&#8221;h3&#8243; text_size=&#8221;h3&#8243;]CLL 101 &#8211; The Basics. PART 2, Michael Rynne &#8211; CLL Ireland.[\/vc_custom_heading][vc_column_text]CLL Horizons 2019, Edinburgh, Foundation Learning, &#8211; Michael Rynne, CLL Advocates Network steering committee member &amp; co-founder of CLL Ireland explains Chronic Lymphocytic Leukaemia.[\/vc_column_text][vc_single_image media=&#8221;918&#8243; media_width_percent=&#8221;100&#8243;][vc_separator][\/vc_column][\/vc_row][vc_row row_height_percent=&#8221;0&#8243; override_padding=&#8221;yes&#8221; h_padding=&#8221;0&#8243; top_padding=&#8221;2&#8243; bottom_padding=&#8221;2&#8243; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;4&#8243; column_width_percent=&#8221;100&#8243; shift_y=&#8221;0&#8243; z_index=&#8221;0&#8243; bottom_divider=&#8221;step&#8221;][vc_column column_width_percent=&#8221;100&#8243; position_horizontal=&#8221;left&#8221; position_vertical=&#8221;middle&#8221; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;3&#8243; medium_width=&#8221;0&#8243; mobile_width=&#8221;0&#8243; shift_x=&#8221;0&#8243; shift_y=&#8221;0&#8243; shift_y_down=&#8221;0&#8243; z_index=&#8221;0&#8243; width=&#8221;1\/1&#8243;][vc_custom_heading heading_semantic=&#8221;h3&#8243; text_size=&#8221;h3&#8243;]CLL 101 &#8211; The Basics. PART 3, Dr Brian Koffman &#8211; CLL Society.[\/vc_custom_heading][vc_column_text]CLL Horizons 2019, Edinburgh, Foundation Learning &#8211; Dr Brian Koffman, CLL Advocates Network steering committee member, CLL Society Chief Medical Officer and Executive Vice President explains Chronic Lymphocytic Leukaemia.[\/vc_column_text][vc_single_image media=&#8221;920&#8243; media_width_percent=&#8221;100&#8243;][vc_separator][\/vc_column][\/vc_row][vc_row row_height_percent=&#8221;0&#8243; override_padding=&#8221;yes&#8221; h_padding=&#8221;0&#8243; top_padding=&#8221;2&#8243; bottom_padding=&#8221;2&#8243; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;4&#8243; column_width_percent=&#8221;100&#8243; shift_y=&#8221;0&#8243; z_index=&#8221;0&#8243; bottom_divider=&#8221;step&#8221;][vc_column column_width_percent=&#8221;100&#8243; position_horizontal=&#8221;left&#8221; position_vertical=&#8221;middle&#8221; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;3&#8243; medium_width=&#8221;0&#8243; mobile_width=&#8221;0&#8243; shift_x=&#8221;0&#8243; shift_y=&#8221;0&#8243; shift_y_down=&#8221;0&#8243; z_index=&#8221;0&#8243; width=&#8221;1\/1&#8243;][vc_custom_heading heading_semantic=&#8221;h3&#8243; text_size=&#8221;h3&#8243;]The Changing Therapeutic Landscape &#8211; Lorna Warwick, CEO Lymphoma Coalition.[\/vc_custom_heading][vc_column_text]CLL Horizons 2019, Edinburgh, Foundation Learning &#8211; The Changing Therapeutic Landscape &#8211; outline discussion to prepare patient advocates ahead of CLL Horizons conference<br \/>\nLorna Warwick, CLL Advocates Network, (Past Chair) &amp; CEO of Lymphoma Coalition[\/vc_column_text][vc_single_image media=&#8221;922&#8243; media_width_percent=&#8221;100&#8243;][vc_separator][\/vc_column][\/vc_row][vc_row row_height_percent=&#8221;0&#8243; override_padding=&#8221;yes&#8221; h_padding=&#8221;0&#8243; top_padding=&#8221;2&#8243; bottom_padding=&#8221;2&#8243; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;4&#8243; column_width_percent=&#8221;100&#8243; shift_y=&#8221;0&#8243; z_index=&#8221;0&#8243; bottom_divider=&#8221;step&#8221;][vc_column column_width_percent=&#8221;100&#8243; position_horizontal=&#8221;left&#8221; position_vertical=&#8221;middle&#8221; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;3&#8243; medium_width=&#8221;0&#8243; mobile_width=&#8221;0&#8243; shift_x=&#8221;0&#8243; shift_y=&#8221;0&#8243; shift_y_down=&#8221;0&#8243; z_index=&#8221;0&#8243; width=&#8221;1\/1&#8243;][vc_custom_heading heading_semantic=&#8221;h3&#8243; text_size=&#8221;h3&#8243;]Getting Started &#8211; Challenges and Lessons &#8211; Dr Neil Graham, founder of CLL Advocates New Zealand[\/vc_custom_heading][vc_column_text]A New Start &#8211; Dr Neil Graham, clinical consultant, CLL patient and founder of CLL Advocates New Zealand (CLLANZ) launched last year, shares experience of the first year. CLL Horizons 2019, Edinburgh, Day 1 Advocacy workshops &#8211; Organisational Sustainability[\/vc_column_text][vc_single_image media=&#8221;925&#8243; media_width_percent=&#8221;100&#8243;][vc_separator][\/vc_column][\/vc_row][vc_row row_height_percent=&#8221;0&#8243; override_padding=&#8221;yes&#8221; h_padding=&#8221;0&#8243; top_padding=&#8221;2&#8243; bottom_padding=&#8221;2&#8243; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;4&#8243; column_width_percent=&#8221;100&#8243; shift_y=&#8221;0&#8243; z_index=&#8221;0&#8243; bottom_divider=&#8221;step&#8221;][vc_column column_width_percent=&#8221;100&#8243; position_horizontal=&#8221;left&#8221; position_vertical=&#8221;middle&#8221; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;3&#8243; medium_width=&#8221;0&#8243; mobile_width=&#8221;0&#8243; shift_x=&#8221;0&#8243; shift_y=&#8221;0&#8243; shift_y_down=&#8221;0&#8243; z_index=&#8221;0&#8243; width=&#8221;1\/1&#8243;][vc_custom_heading heading_semantic=&#8221;h3&#8243; text_size=&#8221;h3&#8243;]An established patient group&#8217;s priorities &#8211; Lise-lott Eriksson, Chair, Blodcancerf\u00f6rbundet[\/vc_custom_heading][vc_column_text]Lise-lott Eriksson, Chair of the Sweidish Blood Cancer Association discusses evidencing advocacy strategies to support the groups membership and prioritising activities.<br \/>\nCLL Horizons 2019, Edinburgh, Day 1, Advocacy workshops &#8211; Organisational Sustainability[\/vc_column_text][vc_single_image media=&#8221;927&#8243; media_width_percent=&#8221;100&#8243;][vc_separator][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[vc_row row_height_percent=&#8221;0&#8243; override_padding=&#8221;yes&#8221; h_padding=&#8221;0&#8243; top_padding=&#8221;3&#8243; bottom_padding=&#8221;2&#8243; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;4&#8243; column_width_percent=&#8221;100&#8243; shift_y=&#8221;0&#8243; z_index=&#8221;0&#8243; bottom_divider=&#8221;step&#8221;][vc_column column_width_percent=&#8221;100&#8243; position_horizontal=&#8221;left&#8221; position_vertical=&#8221;middle&#8221; overlay_alpha=&#8221;50&#8243; gutter_size=&#8221;3&#8243; medium_width=&#8221;0&#8243; mobile_width=&#8221;0&#8243; shift_x=&#8221;0&#8243; [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":143,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-899","page","type-page","status-publish","hentry"],"jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/pages\/899","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=899"}],"version-history":[{"count":34,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/pages\/899\/revisions"}],"predecessor-version":[{"id":966,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/pages\/899\/revisions\/966"}],"up":[{"embeddable":true,"href":"https:\/\/clladvocates.nz\/index.php?rest_route=\/wp\/v2\/pages\/143"}],"wp:attachment":[{"href":"https:\/\/clladvocates.nz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=899"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}