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G
8 meses antes

👍 I've been a part of the National MPS Society for...

👍 I've been a part of the National MPS Society for a while now, and I must say they are doing a fantastic job. The resources provided on their website, mpssociety.org, are incredibly helpful. I appreciate their commitment to raising awareness through various events and campaigns. The support groups offered by the society have been a lifeline for me. Highly recommend checking out the National MPS Society if you or your loved ones are affected by MPS disorders.

T
8 meses antes

The National MPS Society (mpssociety.org) has been...

The National MPS Society (mpssociety.org) has been an incredible source of support for me. Their website provides all the information I need to understand MPS disorders and find the resources I require. The society's commitment to raising awareness is evident in the various events they organize. I appreciate that the organization creates a sense of community among those affected by MPS. It truly makes a difference in our lives. Highly recommended.

K
9 meses antes

National MPS Society is an exceptional organizatio...

National MPS Society is an exceptional organization that provides invaluable support and resources for individuals and families affected by MPS disorders. Their website, mpssociety.org, is a wealth of information and is easy to navigate. The society's dedication to raising awareness and funding for research is commendable. I have personally benefited from their support groups and educational materials. The National MPS Society truly goes above and beyond to make a difference in the lives of those affected by MPS disorders.

R
10 meses antes

I have been involved with the National MPS Society...

I have been involved with the National MPS Society for several years, and I must say they are doing a remarkable job. Their website, mpssociety.org, is a treasure trove of information about MPS disorders and related resources. The society's commitment to funding research and promoting awareness is truly commendable. I have personally witnessed the positive impact they have on individuals and families affected by MPS. I am grateful to be part of such a wonderful organization.

M
10 meses antes

I am grateful for the National MPS Society and the...

I am grateful for the National MPS Society and their dedication to supporting individuals and families affected by MPS disorders. The resources available on their website, mpssociety.org, have been incredibly informative. I appreciate the society's commitment to raising awareness and the support groups they offer. They have been a source of comfort and guidance for me during difficult times. I highly recommend the National MPS Society to anyone seeking support and information.

J
11 meses antes

👌 The National MPS Society is an exceptional organ...

👌 The National MPS Society is an exceptional organization that provides invaluable support and resources for individuals and families affected by MPS disorders. Their website, mpssociety.org, is a comprehensive source of information. I appreciate their commitment to raising awareness and funding research. The support groups and events they organize have been incredibly beneficial. I can't recommend the National MPS Society enough!

O
1 ano atrás

👍 The National MPS Society (mpssociety.org) has be...

👍 The National MPS Society (mpssociety.org) has been an incredible source of support for me and my family. The information and resources provided on their website are top-notch. The society's commitment to raising awareness about MPS disorders is truly admirable. I highly recommend their support groups and events. Keep up the excellent work!

G
1 ano atrás

I recently came across an organization called the ...

I recently came across an organization called the National MPS Society while searching for resources for a family member with MPS. I was pleasantly surprised by the wealth of information available on their website, mpssociety.org. The website is user-friendly and provides a comprehensive overview of MPS disorders and related resources. I appreciate that the organization focuses on supporting individuals and families affected by MPS without promoting their own brand. It truly feels like a community-driven effort.

1 ano atrás

👌 I am impressed with the National MPS Society and...

👌 I am impressed with the National MPS Society and their efforts to support individuals and families affected by MPS disorders. Their website, mpssociety.org, is a comprehensive resource for information and resources. I appreciate their commitment to raising awareness and funding research. The society's support groups and events have been beneficial to me and my family. I can't thank them enough for the work they do.

M
1 ano atrás

I have been involved with the National MPS Society...

I have been involved with the National MPS Society for a few years now, and I am consistently impressed with their dedication to supporting individuals and families affected by MPS disorders. Their website, mpssociety.org, is a valuable resource for information and resources. I appreciate the society's efforts to raise awareness about MPS and their commitment to funding research. The support groups and events they organize have been instrumental in my journey. Highly recommended.

Sobre National mps society

A National MPS Society: defendendo uma cura

A National MPS Society é uma organização sem fins lucrativos que visa curar, apoiar e defender indivíduos e famílias afetados por mucopolissacaridose (MPS) e mucolipidose. Com mais de 40 anos de experiência no campo, a sociedade tornou-se uma voz importante na conscientização sobre esses distúrbios genéticos raros.

MPS é um grupo de distúrbios metabólicos hereditários que afetam a capacidade do corpo de quebrar açúcares complexos chamados glicosaminoglicanos (GAGs). Esses GAGs se acumulam nas células de todo o corpo, causando danos a vários órgãos e tecidos. Existem sete tipos diferentes de MPS, cada um com seu próprio conjunto de sintomas e níveis de gravidade.

A National MPS Society foi fundada em 1974 por pais que buscavam respostas sobre o diagnóstico de seus filhos. Desde então, tornou-se uma rede internacional de famílias, pesquisadores, profissionais de saúde e voluntários que se dedicam a encontrar a cura para essas doenças devastadoras.

Um dos principais objetivos da sociedade é financiar a pesquisa de novos tratamentos e terapias para a MPS. Por meio de parcerias com instituições acadêmicas e empresas farmacêuticas, eles conseguiram apoiar pesquisas inovadoras que levaram a avanços significativos na compreensão desses distúrbios.

Além de financiar iniciativas de pesquisa, a National MPS Society também fornece recursos vitais e serviços de apoio para indivíduos que vivem com MPS. Eles oferecem materiais educativos sobre opções de diagnóstico e tratamento, bem como programas de assistência financeira que ajudam as famílias a cobrir as despesas médicas associadas ao gerenciamento dessas condições.

Outro aspecto crítico de seu trabalho envolve advogar em nome dos indivíduos afetados pela MPS nos níveis estadual e federal. A sociedade trabalha em estreita colaboração com os legisladores para garantir que sejam implementadas políticas que protejam os direitos dos pacientes e, ao mesmo tempo, promovam o acesso a cuidados de qualidade.

No geral, a National MPS Society desempenha um papel essencial no avanço de nossa compreensão desses distúrbios genéticos raros, ao mesmo tempo em que fornece serviços de suporte muito necessários para aqueles que vivem com MPS. Por meio de seus esforços incansáveis, eles estão ajudando a melhorar a vida de inúmeras pessoas e famílias afetadas por essas doenças devastadoras.

Se você ou alguém que você conhece vive com MPS, nós o encorajamos a entrar em contato com a National MPS Society para obter suporte e recursos. Juntos, podemos trabalhar para um futuro em que esses distúrbios não sejam mais uma ameaça à saúde e ao bem-estar de nossos entes queridos.

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National mps society

National mps society

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