Global LSD Collaborative

We were?thrilled?to present our poster,?"The Global LSD Collaborative—Uniting Advocacy to Elevate Care for Lysosomal Communities Worldwide, at #WORLDSymposium2025 in San Diego earlier this month! This marked the?official launch?of our global initiative, the Global LSD Collaborative bringing together advocacy organizations to drive change for lysosomal storage disease (LSD) communities. Our poster highlighted the?key priorities?of the Collaborative: ???Knowledge?– Strengthening the voice of advocacy ???Collaboration?– Promoting global partnerships ???Best Practices?– Advancing clinical efficiency in LSD care ???Therapies?– Sharing insights on new and emerging treatments ???Access?– Ensuring equitable access to therapies ???Policy?– Influencing health policies for LSDs By uniting organizations worldwide, we are creating a?powerful network?to share knowledge, amplify advocacy, and elevate care standards for LSD patients and families. The support and engagement at WORLDSymposium only just confirms that?collaboration is the key to progress! This is just the?beginning for the Collaborative, and if you want to be part of this movement, let’s connect! Big thank you to all the authors - including Daniel Lewi from Cure & Action for Tay-Sachs (CATS) Foundation, Bob Stevens from MPS Society UK, here for those with rare diseases, Toni Mathieson from Niemann-Pick UK (NPUK), Tanya Collin-Histed from International Gaucher Alliance, Justin Hopkin from NATIONAL NIEMANN-PICK DISEASE FOUNDATION, Allan Muir from Pompe Support Network and everyone else (we couldn't tag all the authors)! #GlobalLSD #RareDisease #Advocacy #Collaboration #WorldSymposium #LSDCommunity

Daniel Lewi, Vice Chair of the Global LSD Collaborative and Co-Founder of the Cure & Action for Tay-Sachs (CATS) Foundation sat down at the WORLDSymposium 2025 in San Diego, California, to talk about the Global LSD Collaborative and the need for further collaborative working in the future to ensure positive collective progress for our shared communities ?? You can check out their new website at the link here: https://globallsd.org/

Come see us at the UK LSD Collaborative/Global LSD Collaborative WORLD Symposium booth #601, and why not also pop along to our good friends MPS Society UK, here for those with rare diseases (#603) and the International Niemann-Pick Disease Alliance (INPDA) (#613) too...as Fiona Stewart MBE says, "we have free pens!" What's not to love? ?? ??

Busy scenes here at the WORLDSymposium 2025 in San Diego, California, as we ready ourselves for an informative and inspiring few days! If you're attending the event, please come see us at our booth (#601) to learn more about the work of both the Global LSD Collaborative and the UK LSD Collaborative. #raredisease #lsds #awareness #progress #WORLD

The?Global LSD Collaborative?is delighted to share that we were featured in the latest edition of?the RARE Revolution Magazine (full profile on?pages 51-53). This is an exciting start for the Collaborative and a fantastic way for us to share our vision with the rare disease community! The article highlights: ??Why we were established?– To address the need for a united global voice in the Lysosomal Storage Disorder (LSD) community. ???Our goals?– To advance standards of care, promote collaboration, share best practices, and amplify the voices of patient communities worldwide. ???Our mission?– To build a stronger, more connected global advocacy network, enabling groups to work together while empowering each community to focus on its unique needs. We really believe that collaboration is the key to driving meaningful change for patients and families impacted by LSDs and together, all the members of the Global LSD Collaborative are dedicated to overcoming challenges, raising awareness, and creating innovative solutions that benefit the entire community. ?? Read the full article here:?https://lnkd.in/eprj3gfT The article was written by our members Daniel Lewi from the Cure & Action for Tay-Sachs (CATS) Foundation, Bob Stevens from the MPS Society UK, here for those with rare diseases, Tanya Collin-Histed from the International Gaucher Alliance, Allan Muir from Pompe Support Network and Toni Mathieson from Niemann-Pick UK (NPUK). Thank you to Rebecca Stewart, Nicola Miller, Becky Pender and the whole RARE Revolution Magazine team for showcasing our work and helping us spread the word about our mission! #GlobalLSDCollaborative