The patient association MPS España and the patient engagement expert group admedicum Business for Patients are excited to announce their strategic partnership!
In this unique partnership the not-for-profit MPS España and for-profit admedicum join forces to bring the best of both worlds together for the benefit of people living with Lysosomal storage diseases. Always with the patient view and benefit in mind the Partners will explore and build up joint projects in the interest of people living with Lysosomal diseases that otherwise would not be possible for either Partner alone.
MPS España will provide disease specific expertise, patient insights, content governance and network. admedicum will bring professional project management support, structured patient engagement methodologies and industry experience to the partnership.
MPS España and admedicum will develop the projects from the conceptual stage before then creating alliances with partners from hospitals, medical societies, pharma, biotech or medtech companies. The objective will always be valuable and economically viable solutions for both patients and all other stakeholders involved.
Examples of first partnership ideas include: professionalization of the information sources for families and people living with Lysosomal storage diseases both online and offline, or the creation of a patient-owned patient registry. The list of potential projects also includes making sure the voice of people living with Lysosomal diseases is heard regarding the decisions about priorities in R&D.
“We are excited to start this partnership with admedicum, a trusted and experienced expert group for highly efficient patient engagement.”, says Jordi Cruz, President of MPS España.
“Many at admedicum are patients themselves or parents. Together with them we are very confident to bring MPS España to the next level of powerful advocacy for people living with Lysosomal diseases and their families!”
“Starting projects with patient organisations and driving them from the patient view is often the ideal way to create credible and powerful win-win solutions for everybody,” says Philipp von Gallwitz, Co-Founder and Managing Partner of admedicum and father of an adult daughter living with CDKL5 Deficiency Disorder.
“We feel honored to become partners of MPS España to help getting complex projects on the way that will hopefully contribute to improving the quality of life of families affected by Lysosomal diseases in the long term.”
The collaboration kicked off with a strategy workshop in January 2021 where together we talked about MPS Spain’s objectives and identified priorities for this year.
About MPS España
MPS Spain is a non-profit organization that works every day to raise awareness of Lysosomal diseases such as Mucopolysaccharidosis (MPS) and related rare syndromes like Fabry disease among others. Our mission is to support individuals and families suffering from these diseases, improve their quality of life and promote their social integration.
admedicum Business for Patients designs and implements programs for patient-orientation in the healthcare industry. The company brings patients and industry together to make sure products and services are both tailored to meet the needs of the patients and are economically sustainable.