Today, we launch the International Sanfilippo Syndrome Alliance (ISSA), a global collaboration committed to the rapid delivery of benefits and solutions for individuals with Sanfilippo syndrome and their families.
The founding members of the Alliance are 11 organizations from 10 countries that have worked collaboratively on a range of initiatives, including co-funding research projects around the world. Formalizing this Alliance will help create a stronger, united voice focused on Sanfilippo syndrome. Cure Sanfilippo Foundation is joined by Fondation Sanfilippo Suisse (Switzerland), Fundacja Sanfilippo (Germany), Fundacja Sanfilippo (Poland), Fundacion Stop Sanfilippo (Spain), Sanfilippo Barcelona, Sanfilippo Brasil, Sanfilippo Children’s Foundation (Australia), Sanfilippo Fighters (Italy), Sanfilippo Portugal, and Sanfilippo Sud (France).
We acknowledge the many Sanfilippo families and organizations that have blazed a trail before us and the strong partnerships that they have formed. So many families and their supporters have fought, over decades, to make a difference for their children and for children and families in the future. Without their work, Sanfilippo syndrome would not have received the attention it has and the Sanfilippo research community would not be the strong, diverse field that it is today.
Now, ISSA members seek to bring together the global Sanfilippo community to build on this incredible legacy and strive to achieve even faster, more efficient progress.
While ISSA will be a global collaboration of these Foundations from around the world, each will continue to operate individually on their respective missions.
However, by collaborating on shared priorities for the whole community, we can work more effectively with our colleagues in academic, clinical, not-for-profit, industry and regulatory communities to accelerate drug development and care solutions for Sanfilippo patients and their families.
We can support each other in advocacy to drive improvements in diagnosis, clinical care, and family support, so that individuals with Sanfilippo can access the best care and support, no matter where they live.
We hope to share resources and expertise between the foundations and focus attention on the areas that will benefit from a globally coordinated approach.
Among our early priorities are the exploration of a patient-centered Sanfilippo registry and the translation and dissemination of shared resources such as the Global Roadmap for Sanfilippo Syndrome Therapies and the Sanfilippo Syndrome Consensus Guidelines for Clinical Care.
We look forward to welcoming more members to the Alliance as our work progresses, raising all of our voices even higher.
Contact us if you would like more information or to get involved.