by Axiom Healthcare Strategies
Axiom Catalyst is your go-to for Life Sciences updates, news, and discussion. We will also feature guest speakers to comment on newsworthy developments. Powered by Axiom Healthcare Strategies, and hosted by Hafiz Sikder and the Think Tank Table.
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4/25/2022
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February 26, 2025
<p>Chiranth Achar discussed the rare disease landscape in India with Prasanna Shirol, Co-founder & Director of the <a href="https://ordindia.in/" target="_blank" rel="ugc noopener noreferrer">Organization for Rare Diseases India</a>.</p><p><br>The ORDI would like to make listeners aware of the significant work done by them in aid of rare disease patient in India. This includes India’s First Rare Disease Helpline: (+91) 8892 555 000, the <a href="https://savemylife.in/" target="_blank" rel="ugc noopener noreferrer">Savemylife</a> patient support program, <a href="https://racefor7.com/" target="_blank" rel="ugc noopener noreferrer">Racefor7</a> a symbolic 7,000 meter race to raise rare disease awareness and drive outreach across India to connect all stakeholders, and significant collaboration with international bodies such as <a href="https://www.rarediseasesinternational.org/" target="_blank" rel="ugc noopener noreferrer">Rare Diseases International</a>.</p>
February 26, 2025
<p>Dan Simpson connected with <a href="https://www.usd.edu/research-and-faculty/faculty-and-staff/david-pearce" target="_blank" rel="ugc noopener noreferrer">Prof. Dave Pearce</a>, Chair of the <a href="https://irdirc.org/" target="_blank" rel="ugc noopener noreferrer">International Rare Diseases Research Consortium (</a><a href="https://irdirc.org/" target="_blank" rel="ugc noopener noreferrer">IRDiRC</a><a href="https://irdirc.org/" target="_blank" rel="ugc noopener noreferrer">)</a> and professor of pediatric rare diseases. Prof. Pearce speaks passionately about the needs of rare disease patients around the world, and how the IRDiRC brings together funding agencies, companies, patient advocate groups, and other organization from approximately 80 countries to address patient care through a number of core initiatives.</p><p><br>The IRDiRC is a global collaborative initiative launched in 2011 by the European Commission and the U.S. National Institutes of Health to tackle rare diseases through research and accomplish the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention. Dr. Pearce is an internationally recognized leader in a number of areas. He has published over 100 research papers on Batten disease, founded an international registry for rare diseases known as the Coordination of Rare Diseases at Sanford (CoRDS), and has served on numerous NIH review committees, rare disease advisory boards and has organized rare disease workshops. </p>
February 26, 2025
<p>Marissa McPhillips met Michelle, in her capacity as CEO of <a href="https://link.edgepilot.com/s/b7b33c7f/_A9beXEAUEWyCEspEg6bsA?u=https://www.alltrna.com/">Alltrna</a>, for a constructive conversation around the critical role industry plays in developing innovative treatments for rare disease. We heard how it takes an environment that supports innovation, with incentives, novel clinical trial designs, and other enabling regulations – with Michelle urging the rare disease community to continue to push for these things.<br></p><p>For more information about Alltrna and how they are scaling rare disease drug development by pioneering tRNA medicines to treat Stop Codon Disease, check out their <a href="https://link.edgepilot.com/s/9030f445/NzdBZVI2wEC_QzrkI5F2mA?u=https://www.linkedin.com/company/alltrna/">LinkedIn page</a>, <a href="https://link.edgepilot.com/s/59f4f3a3/_EVXmYEZOUi3w5Q0-Qby8w?u=https://www.youtube.com/@alltrna">YouTube channel</a>, and <a href="https://link.edgepilot.com/s/dd18488f/I1KJszujGkqxnH-CMDwIQQ?u=https://x.com/alltrna">X account </a>(formerly Twitter).</p>
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