New “rare connections” informative modernizes communication on genetic diseases

after more than a decade of disclosure of information on mucopoliscarides (MPs), the newsletter fell on the net to give way to take place To a new initiative: “Rare Connections”, a publication idealized to reflect the evolution of the MPS Brazil network and the growth of interest and performance in other rare genetic diseases. Change marks a new chapter in scientific and institutional communication promoted by Casa dos Raos, and reinforces the commitment to accessible information, current and connected to the reality of patients, professionals and researchers.

MPS Network- “The success of the MPS Brasil network, anchor of the network, naturally led to the expansion of this model to other uncommon conditions,” explains geneticist doctor Roberto Giugliani, co-founder and executive director of Casa dos Raos. “Initially, we expanded to other lysosomal diseases, and later to rare diseases as a whole. This led to the creation of rare connections.”

Expansion - The main transformation of the new newsletter is in the expanded scope. If previously the editorial focus was exclusive about MPs, now the rare connections seeks to represent the broader universe of rare genetic diseases, respecting the diversity of subjects and audiences involved. According to Giugliani, the editorial objective remains clear: “Let's highlight the news in terms of knowledge, diagnosis, treatment and public policies. We want to update readers about the latest advances in the area of rare diseases.”

Format - This expansion is also reflected in the format. “The rare connections is born with a more current conception. The stories will be called short, with QR codes that direct to in -depth content, according to the reader's interest,” says the doctor. “We maintain the language accessible, which has always been one of the brands of falling on the network, but with a more modern and interactive editorial structure.”

Inclusion - In addition to informing, the new newsletter aims to strengthen ties between patients, families, health professionals and researchers. The idea is to promote communication that is a two -way road. “We want to produce relevant content and allow easy and continuous access, with broad dissemination on social networks and space to listen to readers, creating a virtuous cycle of dialogue,” says Giugliani.

Permanent Channel - This approach is in tune with the broader mission of Casa dos Raos, which seeks integration between assistance, teaching, research and information in the field of rare diseases. “Rare Connections will be a permanent channel to disseminate current and accessible information. More than a publication, it will be a community approach tool,” he adds.

Transition - Even with all innovations, the new project does not deny the past. On the contrary, it starts from the previous achievements to go further. "The proposal of the rare connections is not to lose what was conquered with the fall on the network. We departed from the level achieved, perfect the shape and expand the scope," says Giugliani. The MPS Brasil Network, responsible for the original newsletter, continues to act in partnership with Casa dos Raos to ensure a careful and respectful transition with longtime readers.

Reader - The first edition of Rare Connections is already committed to producing in -depth reports, interviews with experts, news in translational research, as well as the voice of patients and family members. “It is a comprehensive, modern and customized newsletter according to the interests of a diverse audience, ranging from health professionals to families who live with rare conditions,” said Giugliani.

Information - With the new format, the information is expected to play an even more relevant role in training health professionals and public awareness. “We believe that rare connections will bring content that allows each segment (clinicians, researchers, caregivers or patients) to access information in the way that best suits your needs,” he points out.

About the rare house

The house of the rare is a reference center dedicated to diagnosis, care, research and education in rare genetic diseases. Uniting state -of -the -art infrastructure, multidisciplinary team and strong performance in scientific dissemination, the institution seeks to promote access to information and specialized care for those who live with rare conditions in Brazil.

About the MPS Brazil Network

Created over 20 years ago, the Brasil Brasil network connects patients, doctors and researchers focused on mucopolysacchariaises and lysosomal diseases. The newsletter fell on the network was one of the pillars of this performance and now gives way to rare connections, which will take this legacy ahead with a new outfit and scope.