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G
8 hace meses

👍 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 hace meses

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 hace meses

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 hace meses

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 hace meses

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 hace meses

👌 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
Hace 1 año

👍 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
Hace 1 año

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.

Hace 1 año

👌 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
Hace 1 año

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.

Alrededor de National mps society

La Sociedad Nacional de MPS: Abogar por una cura

La National MPS Society es una organización sin fines de lucro que tiene como objetivo curar, apoyar y defender a las personas y familias afectadas por la mucopolisacaridosis (MPS) y la mucolipidosis. Con más de 40 años de experiencia en el campo, la sociedad se ha convertido en una voz líder en la creación de conciencia sobre estos raros trastornos genéticos.

MPS es un grupo de trastornos metabólicos hereditarios que afectan la capacidad del cuerpo para descomponer azúcares complejos llamados glicosaminoglicanos (GAG). Estos GAG se acumulan en las células de todo el cuerpo, causando daño a varios órganos y tejidos. Hay siete tipos diferentes de MPS, cada uno con su propio conjunto de síntomas y niveles de gravedad.

La National MPS Society fue fundada en 1974 por padres que buscaban respuestas sobre el diagnóstico de sus hijos. Desde entonces, se ha convertido en una red internacional de familias, investigadores, profesionales de la salud y voluntarios que se dedican a encontrar una cura para estas enfermedades devastadoras.

Uno de los principales objetivos de la sociedad es financiar la investigación de nuevos tratamientos y terapias para MPS. A través de asociaciones con instituciones académicas y compañías farmacéuticas, han podido apoyar investigaciones innovadoras que han llevado a avances significativos en la comprensión de estos trastornos.

Además de financiar iniciativas de investigación, la National MPS Society también proporciona recursos vitales y servicios de apoyo para las personas que viven con MPS. Ofrecen materiales educativos sobre opciones de diagnóstico y tratamiento, así como programas de asistencia financiera que ayudan a las familias a cubrir los gastos médicos asociados con el manejo de estas afecciones.

Otro aspecto crítico de su trabajo consiste en abogar en nombre de las personas afectadas por MPS tanto a nivel estatal como federal. La sociedad trabaja en estrecha colaboración con los legisladores para garantizar que se implementen políticas que protejan los derechos de los pacientes y, al mismo tiempo, promuevan el acceso a una atención de calidad.

En general, la National MPS Society juega un papel esencial en el avance de nuestra comprensión de estos raros trastornos genéticos al mismo tiempo que brinda servicios de apoyo muy necesarios para quienes viven con MPS. A través de sus incansables esfuerzos, están ayudando a mejorar la vida de innumerables personas y familias afectadas por estas devastadoras enfermedades.

Si usted o alguien que conoce vive con MPS, lo alentamos a que se comunique con la Sociedad Nacional de MPS para obtener apoyo y recursos. Juntos, podemos trabajar hacia un futuro en el que estos trastornos ya no sean una amenaza para la salud y el bienestar de nuestros seres queridos.

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National mps society

National mps society

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