{"id":53243,"date":"2025-05-03T12:21:59","date_gmt":"2025-05-03T16:21:59","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=53243"},"modified":"2025-08-23T15:28:26","modified_gmt":"2025-08-23T19:28:26","slug":"lead-with-purpose-hands-on-executive-director-role-at-ecd-global-alliance","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/es\/lead-with-purpose-hands-on-executive-director-role-at-ecd-global-alliance\/","title":{"rendered":"Liderar con un prop\u00f3sito: puesto de director ejecutivo con un enfoque pr\u00e1ctico en ECD Global Alliance"},"content":{"rendered":"<p>Are you a <strong>driven, roll-up-your-sleeves leader<\/strong> who thrives in dynamic, small-team environments? Do you want to make a real difference in the lives of people affected by a rare disease\u2014while wearing many hats and taking action every single day? The <strong>Alianza Mundial contra la Enfermedad de Erdheim-Chester (ECDGA)<\/strong> is looking for a <strong>hands-on Executive Director<\/strong> who\u2019s ready to dive in, lead, and work side-by-side with a small, passionate team.<\/p>\n<p>This is not your typical &#8220;white-collar&#8221; executive role. While the title is Executive Director, this position is <strong>boots on the ground<\/strong>, <strong>highly involved<\/strong>, y <strong>multi-faceted<\/strong>. You\u2019ll be managing day-to-day operations <strong>y<\/strong> doing the work\u2014fundraising, outreach, event planning, and more. Think of it as <strong>part leader, part doer<\/strong>. If you\u2019re looking for a desk-bound, top-down management job, this isn\u2019t it. But if you love being deeply involved, taking initiative, and leading a mission that truly matters, read on.<\/p>\n<h3><strong>Qui\u00e9nes somos<\/strong><\/h3>\n<p>ECDGA is a 501(c)(3) nonprofit that supports those affected by <strong>Enfermedad de Erdheim-Chester (ECD)<\/strong>\u2014a rare, often misunderstood condition. Though small, we have a <strong>global reach<\/strong>, supporting over <strong>1,000 families in 76 countries<\/strong>. Our mission: <strong>sensibilizaci\u00f3n, apoyo, educaci\u00f3n e investigaci\u00f3n<\/strong>.<\/p>\n<p>We are a <strong>tight-knit team<\/strong> of just <strong>3 dedicated staff<\/strong> and a supportive Board of Directors. Our organization may be established, but we operate like a <strong>startup<\/strong>\u2014nimble, passionate, and constantly evolving.<\/p>\n<h3><strong>The Role: Executive Director (Hands-On Leader)<\/strong><\/h3>\n<p>As our Executive Director, you will be <strong>in the trenches<\/strong>, <strong>leading and doing<\/strong>. You\u2019ll oversee the organization, but also roll up your sleeves and <strong>manage nearly every function<\/strong>\u2014from fundraising and public relations to administrative tasks and strategic planning.<\/p>\n<h3><strong>What You\u2019ll Be Doing<\/strong><\/h3>\n<ul>\n<li><strong>Lead by doing<\/strong>\u2014you\u2019ll guide strategy but also make calls, write emails, plan events, and handle day-to-day details.<\/li>\n<li>Work closely with a <strong>small, committed staff<\/strong> to ensure the smooth running of all programs and operations.<\/li>\n<li><strong>Recaudaci\u00f3n de fondos<\/strong>: Build relationships with donors, write grant proposals, and organize campaigns.<\/li>\n<li><strong>Public engagement<\/strong>: Speak at events, manage outreach, and represent ECDGA to the world.<\/li>\n<li><strong>Operations<\/strong>: Oversee budgets, compliance, and program effectiveness, ensuring we meet our goals.<\/li>\n<li><strong>Community support<\/strong>: Engage directly with patients, families, and medical professionals.<\/li>\n<\/ul>\n<h3><strong>Who You Are<\/strong><\/h3>\n<ul>\n<li>A <strong>self-starter<\/strong> who thrives in small, fast-paced environments.<\/li>\n<li>Someone who\u2019s <strong>not afraid to wear many hats<\/strong>\u2014from strategic planning to event logistics.<\/li>\n<li>A <strong>builder<\/strong> who\u2019s excited to help a growing nonprofit mature and expand.<\/li>\n<li>A <strong>people person<\/strong> who can connect with donors, patients, volunteers, and stakeholders.<\/li>\n<li>Passionate about <strong>making an impact<\/strong> in the rare disease community.<\/li>\n<\/ul>\n<h3><strong>Experience &amp; Skills<\/strong><\/h3>\n<ul>\n<li>5+ years in nonprofit leadership or similar <strong>hands-on roles<\/strong>.<\/li>\n<li>Strong background in <strong>fundraising<\/strong>, <strong>team leadership<\/strong>, y <strong>project management<\/strong>.<\/li>\n<li>Comfortable working <strong>remotely<\/strong>, with flexibility and independence.<\/li>\n<li>Excellent communicator\u2014both <strong>written and verbal<\/strong>\u2014with great interpersonal skills.<\/li>\n<li>Willingness to <strong>travel<\/strong> as needed for events and outreach.<\/li>\n<li>Experience working in a <strong>small team<\/strong> or startup environment is a plus.<\/li>\n<\/ul>\n<h3><strong>Compensation &amp; Benefits<\/strong><\/h3>\n<ul>\n<li><strong>Salary<\/strong>: $80,000 \u2013 $90,000 per year.<\/li>\n<li>Paid <strong>vacation<\/strong> y <strong>sick leave<\/strong>.<\/li>\n<li>Work remotely, with a flexible schedule.<\/li>\n<li>Be part of a mission-driven, supportive team making a <strong>global impact<\/strong>.<\/li>\n<\/ul>\n<h3><strong>Why This Role Matters<\/strong><\/h3>\n<p>At ECDGA, we\u2019re not just running an organization\u2014we\u2019re <strong>supporting real people<\/strong> facing an incredibly difficult diagnosis. We\u2019re small, but our work changes lives. This role is your chance to lead, build, and make a <strong>meaningful difference<\/strong> every single day.<\/p>\n<h3><strong>Our Journey So Far &amp; Looking Ahead<\/strong><\/h3>\n<p>While ECDGA is a small nonprofit, we are proud to say that we are a <strong>stable and well-established organization<\/strong> with a solid foundation. Over the years, we\u2019ve achieved <strong>significant milestones<\/strong> in the fight against Erdheim-Chester Disease, including:<\/p>\n<ul>\n<li>Supporting a <strong>global community<\/strong> of over <strong>1,000 families<\/strong> in more than <strong>76 countries<\/strong>.<\/li>\n<li>Partnering with leading <strong>medical professionals<\/strong> y <strong>research institutions<\/strong> to advance understanding and treatment of ECD.<\/li>\n<li>Hosting successful international <strong>annual events<\/strong>, including patient and family gatherings and medical symposiums.<\/li>\n<li>Creating a global Referral Care Center Network to provide patients access to knowledgeable and caring medical teams who can best manage this very complex and rare blood cancer.<\/li>\n<\/ul>\n<p>Despite our size, we\u2019ve made a <strong>real, lasting impact<\/strong>. We are financially sound, mission-focused, and deeply committed to continuing our work for the ECD community.<\/p>\n<h3><strong>Taking ECDGA to the Next Level<\/strong><\/h3>\n<p>While this role is very much <strong>hands-on<\/strong>, we are also seeking a leader who can help us <strong>evolve<\/strong>. Our goal is not to remain in \u201cstartup mode\u201d forever. We want our next Executive Director to help us <strong>build upon our success<\/strong> and guide us toward the <strong>next level of nonprofit management<\/strong>\u2014ensuring long-term <strong>stability<\/strong>, <strong>sustainability<\/strong>, y <strong>growth<\/strong>.<\/p>\n<p>We\u2019re looking for someone who can <strong>balance the day-to-day needs<\/strong> of a small team with <strong>big-picture thinking<\/strong>\u2014someone who will honor our grassroots beginnings while positioning ECDGA for a <strong>strong, thriving future<\/strong>.<\/p>\n<p>If you\u2019re ready to be part of an organization that\u2019s <strong>already making a difference<\/strong>\u2014and to help it grow even stronger\u2014we\u2019d love to hear from you.<\/p>\n<h3><strong>C\u00f3mo presentar la solicitud<\/strong><\/h3>\n<p>If this sounds like you, please send your resume and a cover letter explaining why you&#8217;re the perfect fit to <a href=\"mailto:support@erdheim-chester.org\"><strong>support@erdheim-chester.org<\/strong><\/a>.<\/p>\n<p><em>La Alianza Global contra la Enfermedad de Erdheim-Chester (ECDGA) no ofrece asesoramiento m\u00e9dico, diagn\u00f3sticos ni tratamientos. Todo el contenido tiene car\u00e1cter meramente informativo. Si tiene alguna duda m\u00e9dica, consulte a un profesional sanitario.<\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>Are you a driven, roll-up-your-sleeves leader who thrives in dynamic, small-team environments? Do you want to make a real difference in the lives of people affected by a rare disease\u2014while [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[2251],"tags":[],"class_list":["post-53243","post","type-post","status-publish","format-standard","hentry","category-social-posts"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/53243","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=53243"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/53243\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=53243"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=53243"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=53243"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}