<?xml version="1.0" encoding="UTF-8"?><rss xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:content="http://purl.org/rss/1.0/modules/content/" xmlns:atom="http://www.w3.org/2005/Atom" version="2.0"><channel><title><![CDATA[Social Pharmaceutical Innovation]]></title><description><![CDATA[SPIN]]></description><link>https://www.socialpharmaceuticalinnovation.org/blog</link><generator>RSS for Node</generator><lastBuildDate>Sat, 11 Apr 2026 09:14:33 GMT</lastBuildDate><atom:link href="https://www.socialpharmaceuticalinnovation.org/pt/blog-feed.xml" rel="self" type="application/rss+xml"/><item><title><![CDATA[Ensaios Clínicos Descentralizados: Como o Lugar Afeta os Dados?]]></title><description><![CDATA[Decentralised clinical trials, a potential solution for the complexity of rare disease clinical trials, but what impact may place have?]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/ensaios-cl%C3%ADnicos-descentralizados-como-o-lugar-afeta-os-dados</link><guid isPermaLink="false">63f60bc9dc5d6ce342ca22cc</guid><pubDate>Wed, 22 Feb 2023 12:56:35 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_d48970d4e29c4d2dbed436a9d7c07c22~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Tineke Kleihout-Vliek</dc:creator></item><item><title><![CDATA[Decentralised Clinical Trials - How Place Affects Data]]></title><description><![CDATA[Decentralised clinical trials, a potential solution for the complexity of rare disease clinical trials, but what impact may place have?]]></description><link>https://www.socialpharmaceuticalinnovation.org/post/decentralised-clinical-trials-how-place-affects-data</link><guid isPermaLink="false">63ef5ed4613a08abf9feeb98</guid><pubDate>Fri, 17 Feb 2023 13:07:26 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_d48970d4e29c4d2dbed436a9d7c07c22~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Tineke Kleihout-Vliek</dc:creator></item><item><title><![CDATA[SPIN 'na prática' em conferências científicas, de pacientes e nas políticas do Canadá]]></title><description><![CDATA[Since the commencement of our project, SPINs have increasingly taken the main stage in a variety of conferences in Canada.]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/spin-na-pr%C3%A1tica-em-confer%C3%AAncias-cient%C3%ADficas-de-pacientes-e-pol%C3%ADticas-no-canad%C3%A1</link><guid isPermaLink="false">63d27f0aaa43276008e20ca2</guid><pubDate>Mon, 30 Jan 2023 14:24:29 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/476a99_cf364bee13224b6787c390b8ccc0c9f2~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Conor Douglas</dc:creator></item><item><title><![CDATA[Doenças ultra-raras e a necessidade de inventar um novo modelo de negócios]]></title><description><![CDATA[Ultra rare diseases make it a necessity to review the entanglement of scientific innovation industrial development, and healthcare.]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/doen%C3%A7as-ultra-raras-e-a-necessidade-de-inventar-um-novo-modelo-de-neg%C3%B3cios</link><guid isPermaLink="false">63d10a86126e9f26434bc604</guid><pubDate>Wed, 25 Jan 2023 12:21:33 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_3431ce9bb9314cd392fe11e17dcebd18~mv2.jpg/v1/fit/w_509,h_384,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Florence Paterson</dc:creator></item><item><title><![CDATA[Livro: Da Big Pharma aos Comuns (Commons)]]></title><description><![CDATA[From Big Pharma to Commons, insight into social innovation in rare disease from a French perspective, a book written by Gaëlle Krikorian]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/livro-da-big-pharma-aos-comuns-commons</link><guid isPermaLink="false">63cd09e748da29f7fb5a80a3</guid><pubDate>Tue, 24 Jan 2023 12:31:37 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_0311f52061644edea1b87317c1acf58e~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Florence Paterson</dc:creator></item><item><title><![CDATA[Solidariedade no Financiamento Coletivo para Tratamento de Doenças Raras ]]></title><description><![CDATA[Crowdfunding has been an increasingly common way for patients with rare diseases to access expensive treatments around the world.]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/solidariedade-no-crowdfunding-para-tratamento-de-doen%C3%A7as-raras</link><guid isPermaLink="false">63cd0579ea44829736921a93</guid><pubDate>Mon, 23 Jan 2023 11:15:30 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_de1e3122165c4ffabf945d11303bd8a2~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Tineke Kleihout-Vliek</dc:creator></item><item><title><![CDATA[Vigilância genômica: A chave para a saúde pública canadense? ]]></title><description><![CDATA[The public and private investment in genome sequencing and surveillance will likely have an impact on patients with rare diseases.]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/vigil%C3%A2ncia-gen%C3%B4mica-a-chave-para-a-sa%C3%BAde-p%C3%BAblica-canadense</link><guid isPermaLink="false">63b6afc0d9fff87fa089cb90</guid><pubDate>Thu, 05 Jan 2023 11:36:13 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_9feb6eac53b4482390119290a4ea602b~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Shir Grunebaum</dc:creator></item><item><title><![CDATA[Enquadrando o 'problema perverso' das doenças raras]]></title><description><![CDATA[O problema perverso dos medicamentos órfãos, uma nova forma de entender a lenalidomida, medicamento com várias indicações para doenças raras]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/enquadrando-o-problema-perverso-das-doen%C3%A7as-raras</link><guid isPermaLink="false">63985c743b8101435e9c966e</guid><pubDate>Tue, 13 Dec 2022 11:41:16 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_1f07016d80664b299ddaf5eb1b3667d3~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Equipe de Pesquisas SPIN</dc:creator></item><item><title><![CDATA[SPIN ‘at Work’ in Scientific, Patient and Policy Conferences in Canada]]></title><description><![CDATA[Since the commencement of our project, SPINs have increasingly taken the main stage in a variety of conferences in Canada.]]></description><link>https://www.socialpharmaceuticalinnovation.org/post/spin-at-work-in-scientific-patient-and-policy-conferences-in-canada</link><guid isPermaLink="false">638dc69fcc2f2d43dce72a36</guid><pubDate>Fri, 02 Dec 2022 00:00:00 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/476a99_cf364bee13224b6787c390b8ccc0c9f2~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Conor Douglas</dc:creator></item><item><title><![CDATA[Book: From Big Pharma to Commons]]></title><description><![CDATA[From Big Pharma to Commons, insight into social innovation in rare disease from a French perspective, a book written by Gaëlle Krikorian]]></description><link>https://www.socialpharmaceuticalinnovation.org/post/book-from-big-pharma-to-commons</link><guid isPermaLink="false">6380d409e8a7a3c964f78ce9</guid><pubDate>Fri, 25 Nov 2022 14:45:33 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_0311f52061644edea1b87317c1acf58e~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Florence Paterson</dc:creator></item><item><title><![CDATA[ATS: Da tecnocracia neoliberal a democracia sustentável?]]></title><description><![CDATA[In our latest blog post, we look at the role of Health Technology Assessments in the distribution and allocation of health resources.]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/ats-da-tecnocracia-global-a-democracia-sustent%C3%A1vel</link><guid isPermaLink="false">637b6190dd07520aa618a277</guid><pubDate>Mon, 21 Nov 2022 12:08:44 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_955d929bbd7f4ef18d2c7dc68bffc66e~mv2.jpg/v1/fit/w_1000,h_853,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Claudio Cordovil Oliveira</dc:creator></item><item><title><![CDATA[HTA: From Neoliberal Technocracy to Sustainable Democracy?]]></title><description><![CDATA[In our latest blog post, we look at the role of Health Technology Assessments in the distribution and allocation of health resources.]]></description><link>https://www.socialpharmaceuticalinnovation.org/post/hta-from-neoliberal-technocracy-to-sustainable-democracy</link><guid isPermaLink="false">6378974927b531c7b7ece6bb</guid><pubDate>Fri, 18 Nov 2022 08:59:36 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_955d929bbd7f4ef18d2c7dc68bffc66e~mv2.jpg/v1/fit/w_1000,h_853,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Claudio Cordovil Oliveira</dc:creator></item><item><title><![CDATA[Solidarity in Crowdfunding for Rare Disease Treatment ]]></title><description><![CDATA[Crowdfunding has been an increasingly common way for patients with rare diseases to access expensive treatments around the world.]]></description><link>https://www.socialpharmaceuticalinnovation.org/post/solidarity-in-crowdfunding-for-rare-disease-treatment</link><guid isPermaLink="false">636e90676e251fcf80922d68</guid><pubDate>Fri, 11 Nov 2022 18:16:35 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_de1e3122165c4ffabf945d11303bd8a2~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>SPIN Researcher Team</dc:creator></item><item><title><![CDATA[Alternativas existem: Do diagnóstico ao tratamento com terapia gênica em três anos]]></title><description><![CDATA[É a necessidade de novos tipos de políticas e infraestruturas que requerem nossa atenção e são um foco de pesquisa do nosso consórcio SPIN.]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/alternativas-existem-do-diagn%C3%B3stico-ao-tratamento-com-terapia-g%C3%AAnica-em-tr%C3%AAs-anos</link><guid isPermaLink="false">636cdd06a9683af7ab238a46</guid><pubDate>Thu, 10 Nov 2022 12:35:24 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_15b5180b32154ac58e6df341bcec1091~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Conor Douglas</dc:creator></item><item><title><![CDATA[O Protocolo Holandês de Acesso a Medicamentos Órfãos]]></title><description><![CDATA[Earlier in 2022, in the Netherlands, two key stakeholders started a pilot of the Orphan Drug Access Protocol, bringing SPIN to the forefront]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/o-protocolo-holand%C3%AAs-de-acesso-a-medicamentos-%C3%B3rf%C3%A3os</link><guid isPermaLink="false">6363a0fffcf6aa4834403b4b</guid><pubDate>Thu, 03 Nov 2022 11:38:10 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_98575e4d9c2d4091aa1768697a43bab1~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Tineke Kleihout-Vliek</dc:creator></item><item><title><![CDATA[First Allogenic CAR-T Treatment One Step Closer to Market Authorisation ]]></title><description><![CDATA[The first allogenic CAR-T treatment is one step closer to market authorisation, a development that is certain to have a substantial impact.]]></description><link>https://www.socialpharmaceuticalinnovation.org/post/first-allogenic-car-t-treatment-one-step-closer-to-market-authorisation</link><guid isPermaLink="false">635c5f860b9dfc76d13e07a7</guid><pubDate>Fri, 28 Oct 2022 23:08:24 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_886b6f1bfccc4eb2b19fc4619a77e6fc~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Faisal Ali Mohamed</dc:creator></item><item><title><![CDATA[Ultra-Rare Diseases and the Need to Invent a New Business Model]]></title><description><![CDATA[Ultra rare diseases make it a necessity to review the entanglement of scientific innovation industrial development, and healthcare.]]></description><link>https://www.socialpharmaceuticalinnovation.org/post/ultra-rare-diseases-and-the-need-to-invent-a-new-business-model</link><guid isPermaLink="false">6352b176e4cbe6d7f8d5a320</guid><pubDate>Fri, 21 Oct 2022 14:57:52 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_3431ce9bb9314cd392fe11e17dcebd18~mv2.jpg/v1/fit/w_509,h_384,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Florence Paterson</dc:creator></item><item><title><![CDATA[Scientific Colonialism in Rare Diseases: New Ethical Guidelines]]></title><description><![CDATA[A transnational initiative approved in 2018 a document to ethically guide scientific collaborations involving high and low-income countries.]]></description><link>https://www.socialpharmaceuticalinnovation.org/post/scientific-colonialism-in-rare-diseases-new-ethical-guidelines</link><guid isPermaLink="false">634a174ac81d93a266e80bb1</guid><pubDate>Fri, 14 Oct 2022 17:08:18 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/9d2844_010820c6f94a4a9c9e7bc281345fa90e~mv2.jpg/v1/fit/w_1000,h_905,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Marina Borba</dc:creator></item><item><title><![CDATA[Colonialismo científico em doenças raras: novas diretrizes éticas]]></title><description><![CDATA[Uma iniciativa transnacional aprovou um documento para orientar eticamente colaborações científicas envolvendo países de alta e baixa renda.]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/colonialismo-cient%C3%ADfico-em-doen%C3%A7as-raras-novas-diretrizes-%C3%A9ticas</link><guid isPermaLink="false">634a1f2f8de7d42ce4ebe7c7</guid><pubDate>Fri, 14 Oct 2022 03:00:00 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/9d2844_010820c6f94a4a9c9e7bc281345fa90e~mv2.jpg/v1/fit/w_1000,h_905,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Marina Borba</dc:creator></item><item><title><![CDATA[Preparando o Futuro da Inovação Social e Terapêutica: A Iniciativa das Associações de Pacientes]]></title><description><![CDATA[As associações de pacientes e suas coalizões nacionais já estão trabalhando no desenvolvimento de um 4º Plano Nacional para Doenças Raras n]]></description><link>https://www.socialpharmaceuticalinnovation.org/pt/post/preparando-o-futuro-da-inova%C3%A7%C3%A3o-terap%C3%AAutica-e-social-a-iniciativa-das-organiza%C3%A7%C3%B5es-de-pacientes</link><guid isPermaLink="false">633e9b9df79df817de212f48</guid><pubDate>Thu, 06 Oct 2022 09:45:27 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/25896a_9d4a854815a84729949b641cbc5b0bbe~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Florence Paterson</dc:creator></item></channel></rss>