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G
8 aylar önce

👍 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 aylar önce

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 aylar önce

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 aylar önce

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 aylar önce

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 aylar önce

👌 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 yıl önce

👍 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 yıl önce

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 yıl önce

👌 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 yıl önce

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.

National mps society hakkında

Ulusal MPS Derneği: Bir Tedavi İçin Savunuculuk

Ulusal MPS Topluluğu, mukopolisakkaridoz (MPS) ve mukolipidozdan etkilenen bireyleri ve aileleri iyileştirmeyi, desteklemeyi ve savunmayı amaçlayan, kar amacı gütmeyen bir kuruluştur. Bu alanda 40 yılı aşkın deneyime sahip toplum, bu nadir görülen genetik bozukluklar hakkında farkındalık yaratmada öncü bir ses haline geldi.

MPS, vücudun glikozaminoglikanlar (GAG'ler) adı verilen karmaşık şekerleri parçalama yeteneğini etkileyen bir grup kalıtsal metabolik bozukluktur. Bu GAG'lar vücuttaki hücrelerde birikerek çeşitli organ ve dokularda hasara neden olur. Yedi farklı MPS türü vardır ve her biri kendi semptom grubuna ve şiddet düzeyine sahiptir.

Ulusal MPS Derneği, 1974 yılında çocuklarının teşhisi hakkında cevaplar arayan ebeveynler tarafından kuruldu. O zamandan beri, kendilerini bu yıkıcı hastalıklara çare bulmaya adamış aileler, araştırmacılar, sağlık uzmanları ve gönüllülerden oluşan uluslararası bir ağ haline geldi.

Topluluğun birincil hedeflerinden biri, MPS için yeni tedaviler ve terapiler üzerine araştırmaları finanse etmektir. Akademik kurumlar ve ilaç şirketleriyle ortaklıklar kurarak, bu bozuklukların anlaşılmasında önemli ilerlemelere yol açan çığır açan araştırmaları destekleyebildiler.

Ulusal MPS Derneği, araştırma girişimlerini finanse etmenin yanı sıra, MPS ile yaşayan bireyler için hayati kaynaklar ve destek hizmetleri de sağlar. Teşhis ve tedavi seçenekleri hakkında eğitim materyallerinin yanı sıra ailelerin bu koşulları yönetmeyle ilgili tıbbi masrafları karşılamalarına yardımcı olan mali yardım programları sunarlar.

Çalışmalarının bir başka kritik yönü de hem eyalet hem de federal düzeylerde MPS'den etkilenen bireyler adına savunuculuk yapmaktır. Dernek, hasta haklarını korurken aynı zamanda kaliteli bakıma erişimi teşvik eden politikaların uygulanmasını sağlamak için yasa koyucularla yakın işbirliği içinde çalışır.

Genel olarak, Ulusal MPS Derneği, MPS ile yaşayanlar için çok ihtiyaç duyulan destek hizmetlerini sağlarken, bu nadir genetik bozukluklara ilişkin anlayışımızı geliştirmede önemli bir rol oynamaktadır. Yorulmak bilmeyen çabalarıyla, bu yıkıcı hastalıklardan etkilenen sayısız birey ve ailenin yaşamını iyileştirmeye yardımcı oluyorlar.

Siz veya tanıdığınız biri MPS ile yaşıyorsa, destek ve kaynaklar için Ulusal MPS Derneği'ne ulaşmanızı öneririz. Birlikte, bu bozuklukların artık sevdiklerimizin sağlığı ve esenliği için bir tehdit oluşturmadığı bir gelecek için çalışabiliriz.

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