We are so excited Luke Timmerman recognized Erik Harris, our Chief Commercial Officer and EVP, as a Black Biopharma Industry Leader! Erik has played a key role in building and shaping Ultragenyx and our company culture. His unwavering focus on people, allyship, and the rare disease community shines through every day. Check out the full Timmerman Report article here: https://lnkd.in/eBCC99MK #Ultragenyx #RareDisease #DEIB
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Check out our latest blog post celebrating the conclusion of Pride Month! To close out the celebrations, our UltraProud Employee Resource Group (ERG) hosted a compelling panel discussion, "Allyship: Within Our Workplace and Beyond." Employees across the company engaged in a lively dialogue with thoughtful questions that sparked deep insights and invaluable learnings. Throughout the discussion, one resounding theme stood out: "Action" defines true allyship. We explored the nuances of allyship, acknowledging that it involves a continuous journey of learning, which includes making mistakes and learning from them. This journey is complex and demands safe spaces, ongoing dialogue, empathy, and self-awareness from allies and LGBTQIA+ individuals. At Ultragenyx, we reaffirm embracing diverse perspectives by amplifying the voices of our LGBTQIA+ colleagues. We recognize the significance of enabling our employees to live authentically and continue to foster an environment where everyone can thrive and #GoBeyondEveryday for the #RareDisease community. Read the full blog post here: https://lnkd.in/erQjTjJ9 #PrideMonth #Allyship #DiversityAndInclusion #WorkplaceEquality #LGBTQIA
UltraProud: allyship in the workplace and beyond - Ultragenyx
https://www.ultragenyx.com
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This critical new program in Florida is a result of legislation that was passed into law to promote development of innovative new therapies with the goal of improving the lives of children and their families affected by rare and ultrarare diseases. Learn more: https://lnkd.in/erySkfzE #RareDisease #UltraRare
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"I Am: Celine Dion" offers a deeply personal glimpse into the life of a superstar confronting her struggle with the #RareDisease, #StiffPersonSyndrome (SPS), a progressive neurological disorder targeting the brain and spinal cord. Symptoms range from severe muscle stiffness to painful spasms that limit mobility. SPS affects 1-2 in a million people and women twice as much as men. Shining a light on rare and #UltraRare diseases will hopefully elevate important discussions around increasing research and faster approvals for rare diseases. Learn more about SPS and the work The Stiff Person Syndrome Research Foundation is doing: https://stiffperson.org/ #TeamCeline #IAmCelineDion #Ultragenyx
I applaud Celine Dion for courageously shedding light on her battle with stiff person syndrome and amplifying awareness and dialogue around rare diseases that is necessary. A diagnosis of a rare disease like stiff person syndrome represents one of the most challenging medical scenarios due to the limited number of patients, insufficient research, challenging traditional approval pathways and relying on old science when precision treatments are available. To Celine Dion’s medical team, @Dr. Amanda Piquet and the @University of Colorado Anschutz Medical Campus, @Tara Zier,and Dr. @Jim Weiss, @The Stiff Person Syndrome Research Foundation, thank you for working tirelessly in advancing research and finding treatment options for Celine, and the greater rare disease community. With over 10,000 rare diseases that have a profound global impact, your story highlights the need for a more responsive and practical regulatory framework. We cannot afford delays; the science is there, and we must push forward. It’s time for policy to catch up. Your bravery and openness inspire us to keep pushing harder and inspire us to keep fighting for those who need it most. Thank you for shining a light on this critical issue. https://lnkd.in/gAeE5g4B #TeamCeline, #IAmCelineDion, #StiffPersonSyndrome, #RareDisease, #Ultragenyx
I Am: Celine Dion - Official Trailer | Prime Video
https://www.youtube.com/
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Since our founding days, our mission has been to support and empower those affected by #XLinkedHypophosphatemia (XLH), a condition that often emerges in childhood. On this #XLHAwarenessDay, we continue to champion the strength and resilience of the XLH community. Their stories inspire us, and we #GoBeyondEveryDay to improve the lives of those living with XLH. Explore more about XLH and the experiences of those impacted by this #RareDisease: https://lnkd.in/eRYGgja5 #XLHAwarenessMonth #XLHAwareness #XLHStrong
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This week, we were privileged to host the ribbon-cutting ceremony for our Somerville R&D Facility, joined by Governor Maura Healey, Mayor Katjana Ballantyne, Secretary Kate Walsh, and Undersecretary Sarah Stanton. This facility stands at the heart of our research and development endeavors in gene therapy. Thank you all for joining us at the opening! We are thrilled be part of the Mass. Innovation & Life Science community. We look forward to pursuing our mission of bringing new treatments – and hope – to the patients and their families living with rare and ultrarare diseases. #Ultragenyx #RareDisease #UltraRare
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We're thrilled to be acknowledged by Barron's among the Top 100 Most Sustainable U.S. Companies. Our focus extends to rare disease patients, our Ultragenyx team, driving innovation, embracing our communities, respecting the planet, and building strong corporate governance. Through our strategic initiatives, we prioritize lasting positive impacts—not just for today, but for every day ahead. Learn about our Corporate Responsibility here: https://lnkd.in/emKfNXBc #RareDisease #ESG #CorporateResponsibility
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“Recognizing Juneteenth or Freedom Day in the workplace isn't just about a day off; it's about fostering education, reflection, and action toward racial equity. It shows Black employees that you stand with them, and that you recognize and acknowledge the Black experience, the end of slavery and their ongoing struggles today." - UltraMosaic Employee Resource Group at Ultragenyx #Ultragenyx #Juneteenth #DEIB
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Don't miss this timely article from BioCentury Inc. featuring insights from our CEO, Emil Kakkis, urgently calling for a new approval pathway for ultrarare diseases. It's time to define "ultrarare" and adapt regulatory frameworks to ensure lifesaving therapies reach those who need them most. Read more here: https://lnkd.in/eADk3x4K #Ultragenyx #RareDisease #UltraRare
Debating a new pathway for ultrarare
biocentury.com
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In light of #CDKL5 Awareness Day, we are honored to have joined the International Foundation for CDKL5 Research (IFCR) and the #CDKL5 community for the 6th Annual Educational & Awareness Conference. #CDKL5 Deficiency Disorder (CDD) is one of the most common genetic pediatric epilepsies, affecting tens of thousands of patients and we are proud to support the International Foundation for CDKL5 Research (IFCR) in raising awareness of CDD. Thank you to the IFCR for hosting an impactful event and to all who participated with us. Through education, research, and collaboration, we can turn hope into action for the #RareDisease community. Explore more about the incredible work the IFCR is doing here: https://www.cdkl5.com/ #CDKL5AwarenessMonth
Home | International Foundation for CDKL5 Research
cdkl5.com
Chair of Neurvati Neurosciences , Former CEO at H. Lundbeck A/S
3dNice to see the recognition of Erik Harris’s leadership! Well deserved indeed