The first book on alpha mannosidosis

Carmen Passolas, Director of Corporate Relations and Sustainability at Chiesi Spain.

cheesy spain, In cooperation with mbsThe Lysosomal Diseases Society, launched the first book on rare diseasesWith the aim of honoring all people suffering from one of these diseases, as well as their caregivers and their relatives, and increasing their appearance. Specifically, this first edition is dedicated to Manoside AlphaIt is a very rare disease of the lysosomal group, affecting between one and nine newborns out of every million. In Spain, there are currently less than 10 cases detected.

for Jordi CruzAssembly Manager MPS-Lysosomal, “Such actions make it possible for us to contribute knowledge rare diseases In particular, alpha-manoside disease. Families get our support from the association and we must raise awareness to continue taking steps towards that Creating well-being for families and ensuring a valued and more tolerant society. We are not alone, we support each other and have campaigns like this.”

Through the project, the goal was to make the disease visible, to educate the population about what it means to live with alpha mannosidosis and to remember the need for these patients to have access to appropriate treatment, allowing them to live as common a life as possible. This book is a continuation of the work that has been done jointly Luis Spain and the assembly MPS- lysosomalwhere it collects the best works recorded in 1st International Photography and Short Film Competition Dedicated to rare diseases, which ran throughout 2021 and culminated in an award ceremony at the end of November, in the context of Alpha Manocidus Awareness Day.

In addition, within the framework of the law, Chiesi Spain together with FEDER, the first organization in Spain to represent the group affected by rare diseases, organized the celebrationStella’s birthdaya work focused on the documentary film of a 24-year-old patient with alpha-manoside disease in which her daily life is explained.

Carmen Basoulas The Director of Corporate Relations and Sustainability at Chiesi Spain explains that “what we are looking for with the launch of this book is that the community realizes human disease background, the strength of relatives and the vital profile of the people affected. At Chiesi and as B Corp, because of our commitment to improving the planet, the environment and people’s lives, we want to find innovative treatments that give people with a rare disease access to A treatment that can improve your quality of life.”. While he continued with his thanks “both MPS and Feder for the wonderful work they are doing to bring to light this type of disease, which the community needs to know and understand.”


Casey’s commitment to rare diseases

In Spain there Three million people affected by a strange disease It is estimated that there are about 7,000 rare diseases. It is a type of pathology that requires a significant investment in research and development and in Chiesi, they work with the goal of making a positive impact both on patients and caregivers, as well as on the communities and environment of which they are a part. So, by putting people at the center of their strategy, they have more than 10 years of research for rare and extremely rare diseases that greatly affect European citizens. As a result of all these years of work and research, Chiesi Spain has been owning since 2020 division “rare” Specializes in providing answers to these diseases with treatments for diseases such as alpha mannosidosis; Renal cystinosis or Leber’s hereditary optic neuropathy.

In addition, among the historical monuments of the European Medicines Agency (EMA), the contribution of Chiesi to rare diseases has been recognized, due to its possession of The first gene therapy approved by the EMA in 2012 And with the first stem cell treatment in 2014. This recognition came to reinforce the firm commitment they made toResearch and development field For advanced treatments in the field of rare diseases.

As Carmen Bassolas explains, “The discovery of a drug that improves the quality of life for people with a rare disease is a scientific milestone, But it’s also one of the biggest satisfying things for a drug company. Hence, one of our priorities in terms of research and development is to provide innovative and sustainable treatments for people with rare diseases.”

From the Group and from all its subsidiaries, they carry out their activities with the strong conviction that being a sustainable company is the only way to move towards a transition to a low carbon economy, more inclusive, equitable and sustainable for people and the planet. That’s why, in 2018, they became Benefit Company Incorporating the goals of mutual benefit into its laws to create a positive impact on society and the environment, and integrating the concept of creating shared value in its economic activity. As a result of this commitment, in 2019 they became MThe largest pharmaceutical group to be B Corp globally. This certification is awarded to those who meet high social and environmental standards.

In this sense, considering rare diseases, the biggest challenge as a pharmaceutical laboratory is to help a fatherFinding solutions through research and development, In addition to working with associations of patients and health professionals to improve Underdiagnosis.

Although it may contain statements, statements, or notes from health institutions or professionals, the information in medical writing is edited and prepared by journalists. We recommend the reader to consult a health professional for any health-related questions.

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