Session videos from our 2024 RARE Drug Development Symposium are now available to watch on our website! 👋 Equip yourself with the knowledge, skills and connections needed to advance therapy development for your community and beyond at the link below: 🌐 https://lnkd.in/eKGUUXAG #RDDS #RDDS2024 #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes
Global Genes
Non-profit Organizations
Aliso Viejo, CA 15,591 followers
Leading patient advocacy organization working to eliminate the challenges of rare disease. #CareAboutRARE #RareDisease
About us
Empowering the Next Generation Rare Disease Advocate. Global Genes and RARE-X officially merged into one organization December 2022 under the name Global Genes. Both organizations have been working toward the goal of empowering the next generation advocate both through their individual initiatives and their strategic partnership announced in 2021. In fact, RARE-X was born out of Global Genes after discussions with advocacy leaders, board members, partners, patients, and care partners, addressing a significant gap in access to tools, technology, and infrastructure. We're Hiring! Check out our open positions at https://globalgenes.org/about-us/career-opportunities/
- Website
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http://www.globalgenes.org
External link for Global Genes
- Industry
- Non-profit Organizations
- Company size
- 11-50 employees
- Headquarters
- Aliso Viejo, CA
- Type
- Nonprofit
- Founded
- 2009
- Specialties
- Rare Disease Awareness, Public and Physician Education, Supporting Research Initiatives, Patient Advocacy, Rare Disease, Undiagnosed Patient Program, Education, Genetics, Events, Programs, Resources, Connect, Empower, Inspire, FoundationAlliances, and CorporateAlliances
Locations
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Primary
Get directions
28 Argonaut
Suite 150
Aliso Viejo, CA 92656, US
Employees at Global Genes
Updates
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Our RAREcast podcast has officially hit 500 episodes! That’s 500 opportunities to: 🔊 learn more about the intersection of rare disease with business, science, and policy. 🔊 hear about others experiences with rare disease 🔊 think about your everyday involvement and understanding of the rare disease community and beyond And this is a special episode! Joining us is Effie Parks, host of the Once Upon a Gene podcast, to talk about her journey as a mother of a child with a rare disease, recent efforts to navigate the experience, and her effort to map the journey with “Effie’s Roadmap.” Listen now wherever you get your podcasts! 🎙️ #CareAboutRare #RareDisease #GlobalGenes #RareDiseaseAwareness #RAREcast
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To recognize CASK Gene Awareness Day, Global Genes reached out to Giovi Moschoudis, mother to Angelina who has CASK Gene Disorder, Founder of Angelina CASK Neurological Research Foundation Australia & USA and Co-Founder of CASK Coalition. Read their story below! 🧬 https://lnkd.in/e7p4hmi8 #CareAboutRare #RareDisease #GlobalGenes #RareDiseaseAwareness #CASKGeneAwarenessDay
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This week, Global Genes teamed up with BridgeBio in Washington, D.C. to discuss drug development and innovation for rare diseases! Big thanks to Rep. Richard Hudson (R-NC), Rep. Don Davis (D-NC), Rep. Kevin Mullin (D-CA), Rep. Gus Bilirakis (R-FL), and Senator Ted Budd (R-NC) for meeting with our CEO, Charlene Son Rigby, and BridgeBio to understand the importance of maintaining practical policies for rare disease drug development and access. #CareAboutRare #RareDiseaseAwareness #RareDisease #GlobalGenes
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Are you attending the North America Rare Disease Summit tomorrow? Don't miss our board member, Christina M. Hartman, on her panel, Smart Access Reforms for Orphan Drugs at 10am CT.
📣 Announcing Our Expert Panel on Orphan Drug Access! 📣 Join us at the North America Rare Disease Summit on July 11th, 2024, in Chicago for an insightful panel on Smart Access Reforms for Orphan Drugs. We are thrilled to have some of the brightest minds in Rare Diseases from across North America sharing their experiences and knowledge: Durhane Wong-Rieger: President & CEO, Canadian Organization for Rare Disorders (Canada) Erica Barnes: Executive Director, The Minnesota Rare Disease Advisory Council (United States) Sarah Glass, PhD: Chief Operating Officer, n-Lorem Foundation (United States) Christina M. Hartman: Board Member, Global Genes (United States) Jocelyn Ulrich, MPH: Vice President of Policy and Research, PhRMA (United States) Bruce Bloom: Chief Science Officer, Kabuki Syndrome Foundation & Chief Collaboration Officer, Healx (United States) – Moderator Sarah Glass, PhD highlighted the importance of this gathering: "This meeting will bring together some of the brightest minds in Rare Diseases from across North America. In order to achieve our individual goals for those impacted by rare diseases, it is critical to learn from one another’s successes and challenges." Don’t miss this opportunity to engage with key decision-makers and innovators in the field of Rare Diseases. Register now to secure your spot: bit.ly/NARDS2024 #NARDS #RareDisease #HealthcareInnovation #PatientAdvocacy #BambergHealth
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Every person’s story is unique. From experiences with caregiving, treatments, and raising awareness, we believe that it’s important for you to be able to share your story effectively. Join Global Genes July 16th for a virtual session on how to share your journey through blog posts, podcasts, films, and more! 🗣️ We’ll have expert presenters from Couragous Parents Network, EveryLife Foundation and The Mighty, so secure your RSVP to our RARE Storytelling Webinar below! 💻 🌐 https://lnkd.in/eS6vEeeY #CareAboutRare #RareDisease #GlobalGenes #RareDiseaseAwareness
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As the agenda is finalized and speakers are lining up for our Week in RARE conference coming up in just a few short months, you may start to ask yourself 🤔… “Is this the year I attend?” “What’s different about Week in RARE 2024?” “What will I learn that will help me become a better advocate for myself or others?” …and these are all great questions! To get started with finding the answers, scroll over our official Top 10 Reasons To Attend & take the plunge to register today! 🌟 🌐 https://lnkd.in/eh9BQnhX #WeekInRARE #RARESummit #RAREHealthEquity #GGSummit #GGSummit2024 #GlobalGenes #CareAboutRare #BeCounted #RAREX #RareDisease
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As a rare patient or caregiver, you probably have both the lived experience and research under your belt to make you an expert in your rare disease. Finding common ground with your HCP can be tricky, so that’s why we’ve created a blog post on tips to focus the narrative you tell of your medical needs with your HCP ✅ Check them out below! 📖 https://lnkd.in/euT-DGFY #CareAboutRare #RareDisease #GlobalGenes #RareDiseaseAwareness
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There’s No Place Like Hope! 🪄🌈 Join Global Genes for an inspiring week in Kansas City, MO from Sept. 25th - 28th to connect, collaborate, and celebrate what it means to be a RARE advocate. Join others to forge meaningful connections, create future collaboration opportunities, and build a community founded on research, advocacy, and HOPE! 💙 Now’s the time to secure your registration HERE: https://lnkd.in/gXYujq3c #WeekInRARE #RARESummit #RAREHealthEquity #GGSummit #GGSummit2024 #GlobalGenes #CareAboutRare #BeCounted #RAREX #RareDisease
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We’d like to give a warm welcome to our June 2024 Global Advocacy Alliance members! 🌟 Project CASK 🌟 16p11.2 Genetic Foundation Learn more about this global community of 750+ rare disease advocacy organizations by visiting the Global Advocacy Alliance page on our website & see how Global Genes can help your organization create community & support networks for rare disease awareness! 🌐 https://lnkd.in/e2b-mnhH #CareAboutRare #RareDisease #GlobalAdvocacyAlliance #GlobalGenes #RareDiseaseAdvocacy #RareDiseaseAwareness
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