João Victor Lima
A associação parece oferecer um suporte muito bem estruturado para as famílias. O site é direto e as informações sobre a síndrome estão claras e acessíveis para quem precisa.
Questions about Associação 1p36 Brasil
What is Associação 1p36 Brasil?
Associação 1p36 Brasil is a Brazilian non-profit organization that supports families, disseminates quality information, and encourages research related to 1p36 Deletion Syndrome. It originated from Grupo Laços, a support network created about ten years ago to welcome families and share experiences about the syndrome. The association operates as a community that connects people affected by the condition and advocates for the rights of individuals with the syndrome and their families.
How large is the community and how many people have been mapped in Brazil?
The organization reports mapping 104 people with 1p36 in Brazil and currently has 45 members. It maintains a community of around 1,000 followers and supporters who are connected through its website and social media channels. This network aims to strengthen a movement based on welcoming, knowledge exchange, and defending the rights of people with the syndrome and their families.
What are the estimated incidence rates and causes of 1p36 Deletion Syndrome?
The website states that the syndrome affects approximately 1 in every 5,000 to 10,000 births. It is considered one of the most frequent chromosomal deletion syndromes, caused by the loss of a small segment of the short arm of chromosome 1. This genetic condition can impact neurological, motor, cognitive, and physical development in various ways.
What specific resources and sections are available on the official website?
The association offers a blog and a 'Deleção 1p36' section on its website that covers characteristics, causes, diagnosis, treatment, and prognosis. It also provides a 'Quem somos' (Who we are) page detailing the association, board of directors, and associated members. These resources aim to disseminate quality information to those seeking knowledge about the condition.
How can someone join the network or support the association?
To get involved, individuals can join the Grupo Laços network or become an associate or supporter through the website. The organization invites people to connect with a community that shares experiences and works together for a more inclusive future. There are options to associate or support the cause to help fund family support and research initiatives.
Which geographic areas does the association primarily serve?
The association operates primarily in Brazil, serving families and individuals affected by 1p36 Deletion Syndrome across the country. It focuses on local advocacy and community building while disseminating information relevant to the Brazilian context. The organization's reach is concentrated within the national landscape where the syndrome is mapped.
How does financial or community support contribute to the organization's goals?
The website mentions that contributions help in welcoming families, encouraging research, and providing quality information to those in need. It highlights that support can be given by associating or becoming a supporter to make a difference. These actions directly contribute to the organization's mission of transforming lives through knowledge and support.
How is Associação 1p36 Brasil rated on Trustburn?
On Trustburn, Associação 1p36 Brasil has a rating of 4.4 out of 5 based on 5 reviews.
AI-generated from reviews on this page. Verify anything important with the company directly.
Ana Paula Ferreira
A estrutura da Associação 1p36 Brasil transmite profissionalismo e clareza. O site detalha a condição genética com precisão, citando a perda do braço curto do cromossomo. A menção ao CNPJ e à estrutura de diretoria reforça a seriedade da entidade. É uma referência confiável para buscas sobre a síndrome.
Roberto Mendes
É fascinante observar como a 1p36 Brasil transformou o Grupo Laços em uma associação robusta! A ideia de conectar famílias e compartilhar conhecimento parece realmente inovadora no cenário de doenças raras. Embora outras associações possam ter estruturas diferentes, o foco no acolhimento e na defesa dos direitos dos associados destaca-se positivamente. A presença de uma diretoria e associados registrados dá uma legitimidade institucional que é muito bem-vinda. A estimativa de incidência de um para cada cinco mil nascimentos mostra a relevância do grupo. Ter um canal direto por email e redes sociais facilita a comunicação. Parece uma alternativa muito promissora para quem deseja se informar sobre a perda do segmento do cromossomo 1.
Mariana Costa Oliveira
O que mais me impressiona na 1p36 Brasil é a estrutura organizada que permite a conexão eficiente entre famílias. O site apresenta informações claras sobre a síndrome, características, causas e tratamentos, facilitando o acesso ao conhecimento necessário. O Grupo Laços, mencionado como precursor da rede, já acolhia pessoas há dez anos, o que demonstra uma trajetória sólida de apoio. Saber que existem cem pessoas mapeadas no país e mais de mil seguidores cria uma sensação de comunidade forte. A possibilidade de se associar ou ser apoiador torna a participação acessível. Para quem busca informações confiáveis sobre a Deleção 1p36, este é um ponto de partida excelente. A organização do conteúdo e a facilidade de encontrar detalhes sobre o prognóstico e a incidência da condição tornam a experiência do usuário muito positiva.
Carlos Eduardo Silva
A Associação 1p36 Brasil oferece suporte fundamental para quem convive com a síndrome. O acolhimento e a troca de experiências entre os associados parecem muito eficazes.
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Associação 1p36 Brasil is a Brazilian association that supports families, disseminates quality information, and encourages research related to 1p36 Deletion Syndrome, a rare genetic condition caused by the loss of a segment of chromosome 1. The organization originated from Grupo Laços, a support network created about ten years ago to welcome families and share experiences about the syndrome. It operates as a community that connects people affected by the condition and advocates for the rights of individuals with the syndrome and their families. According to the website, the association reports mapping 104 people with 1p36 in Brazil and has 45 members and around 1,000 followers and supporters.
- Website
- 1p36.org.br
- contato@1p36.org.br
- Categories
- Non-profit organization management