Rare Genetic Diseases Program
On Mosaico TV, Roni Gotthilf hosted an interview in October 2024 about the Rare Genetic Diseases Program. Despite the date, the subject remains highly relevant for raising community awareness.
Guests
• Miriam Vasserman, Vice President of FISESP
• Vivian Lederman, Biologist
• Renato Vaisbih, Journalist and Press Officer at StandWithUs
• Beni Vaisbih, Renato’s son and living with a rare disease
Beginning of the Conversation
Miriam Vasserman shared the story of a mother seeking support. From this need, the program was born voluntarily, with the help of Marco Knobel.
Frequency of Rare Diseases
Biologist Vivian Lederman explained that in the general population, rare genetic diseases affect about 1 in every 1,000 to 10,000 people. Within the Jewish community, however, the incidence is significantly higher: 1 in every 100 people. She emphasized the importance of genetic testing to identify potential genes linked to these conditions.
Lederman also highlighted that there are dedicated websites offering information and guidance:
https://programatestagemgenetica.org.br/
Impact of the Diseases
Lederman warned that some of these conditions are highly degenerative, causing immense family suffering. In certain cases, children may pass away within just two or three years of life. In others, treatments can help minimize the effects, but early diagnosis is always crucial.
Personal Testimony
Journalist Renato Vaisbih shared his experience as Beni’s father. For a long time, even doctors could not identify his son’s condition. The diagnosis was only possible through tests conducted in the United States.
He described the challenges of balancing his son’s care, family routine, and the mission of raising awareness about the importance of genetic testing. For Renato and his family, this struggle has become a personal cause.
Closing Remarks
Beni concluded the program with an emotional appeal: that everyone undergo genetic testing to prevent future pain and suffering. His words conveyed the urgency and importance of the issue.
It is worth noting that genetic tests can identify up to 300 different diseases, offering a unique opportunity for prevention and care.
