fkrp-registry.org

Home - Global FKRP Registry

The Global FKRP Registry is an international registry that collects genetic and clinical data about persons affected by conditions caused by mutations in the. Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type 2I ( LGMD2I. And the rarer conditions Congenital Muscular Dystrophy ( MDC1C. Muscle Eye Brain Disease ( MEB. And Walker-Warburg Syndrome ( WWS. Patients from anywhere in the world can register. Since patients with FKRP mutations are rare, every single person counts!

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CONTACTS AT FKRP-REGISTRY.ORG

Klinikum der Universitaet Muenchen, MD-NET

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The Global FKRP Registry is an international registry that collects genetic and clinical data about persons affected by conditions caused by mutations in the. Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type 2I ( LGMD2I. And the rarer conditions Congenital Muscular Dystrophy ( MDC1C. Muscle Eye Brain Disease ( MEB. And Walker-Warburg Syndrome ( WWS. Patients from anywhere in the world can register. Since patients with FKRP mutations are rare, every single person counts!

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Home - Global FKRP Registry | fkrp-registry.org Reviews

https://fkrp-registry.org

The Global FKRP Registry is an international registry that collects genetic and clinical data about persons affected by conditions caused by mutations in the. Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type 2I ( LGMD2I. And the rarer conditions Congenital Muscular Dystrophy ( MDC1C. Muscle Eye Brain Disease ( MEB. And Walker-Warburg Syndrome ( WWS. Patients from anywhere in the world can register. Since patients with FKRP mutations are rare, every single person counts!

INTERNAL PAGES

fkrp-registry.org

1

Data protection information - Global FKRP Registry

https://www.fkrp-registry.org/patients_information/data_protection/index.en.html

What is a patient registry? Why should I register? What information is collected? How do I register? Where will my data be stored? In the questionnaire we ask you for some personal data and some information about your condition. Your data will be stored securely and no unauthorized people will be able to gain any information about you. All of the data held in the Global FKRP Registry is held securely at the Friedrich-Baur-Institute, Klinikum der Universität München. Will my data be kept confidential?

2

Useful information - Global FKRP Registry

https://www.fkrp-registry.org/links/index.en.html

Where to find information about. Cure CMD is a patient organisation that is dedicated to bringing research, treatments and hopefully a cure for congenital muscular dystrophies. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing over 600 disease patients organisations in 58 countries. They seek to improve the quality of life of people living with rare disease in Europe through advocacy, support for research, networking and raising awareness. The MDC is the leading...

3

Patients' Stories - Global FKRP Registry

https://www.fkrp-registry.org/patient_stories/index.en.html

Click on one of the headings below to read the stories in our library written by patients who are particiating in the Registry. If you have a story that you would like to share then please get in touch. My Life with LGMD2I by Anonymous. It was my party trick by Melissa Grove. It's part of me by Lacey Woods. Standing tall by Lindsay Mullins. My Life with LGMD2I by Anonymous. 2 Twenties and Thirties. You've got to know what the heck is going on. A this does not work attitude doesn't work. Imagine my surpri...

4

Home - Registro Internacional de Pacientes FKRP

https://www.fkrp-registry.org/index.pt.html

Informações para os pacientes. Estórias de pacientes (em inglês). Informações para os médicos. Pesquisas recentes (em inglês). Registro Internacional de Pacientes FKRP. O Registro Global FKRP é um cadastro internacional que coleta informações genéticas e clínicas sobre pessoas afetadas por doenças causadas por mutações no gene. Doença de Músculos-Olhos-Cérebro e Síndrome de Walker-Warburg. Pacientes de qualquer lugar do mundo podem se cadastrar. Carol e Susan, irmãs com LGMD2I.

5

Home - Global FKRP Registry

https://www.fkrp-registry.org/index.en.html

The Global FKRP Registry is an international registry that collects genetic and clinical data about persons affected by conditions caused by mutations in the. Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type 2I ( LGMD2I. And the rarer conditions Congenital Muscular Dystrophy ( MDC1C. Muscle Eye Brain Disease ( MEB. And Walker-Warburg Syndrome ( WWS. Patients from anywhere in the world can register. Since patients with FKRP mutations are rare, every single person counts!

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jain-foundation.org

Patient Registration | Jain Foundation

http://www.jain-foundation.org/form1.php

Patient and Physician Resources. Clinical Studies and Trials. Automated LGMD Diagnostic Assistant (ALDA). Free Genetic Diagnosis for LGMDs. Thank you for your interest in registering with the Jain Foundation. The Jain Foundation has partnered with several other LGMD family foundations to offer free genetic testing for individuals suffering from muscular dystrophy to help them obtain a definitive and specific genetic diagnosis. Undiagnosed Patients in the United States. Undiagnosed Patients in India.

cmdir.org

PatientCrossroads CMD

https://www.cmdir.org/index.php

Bio Bank and Tissue Repository. Registered affected individuals are required for:. Government intervention and funding. By registering you will also receive:. Notice of available clinical trials that apply to your registered profile. Notice of available therapies that apply to your registered profile when they become available. The Congenital Muscle Disease International Registry ( CMDIR. We will not be successful in finding a treatment or cure unless we know. Who the affected individuals are,. The follo...

mda.org.au

Muscular Dystrophy - "The Home of MDA"

http://www.mda.org.au/Disorders/Dystrophies/LGMD.asp

What Is Limb Girdle Muscular Dystrophy? The muscular dystrophies are a group of muscle diseases which have three features in common: they are hereditary; they are progressive; and each causes a characteristic, selective pattern of muscle weakness. Bull; What are the different types of LGMD? Bull; What are the symptoms of LGMD? Bull; What causes LGMD and how is it inherited? Bull; How is LGMD diagnosed? Bull; Why is genetic counseling important? Bull; What can be done to manage the symptoms? 5 to 20 years.

curelgmd.com

Links - Cure LGMD

http://www.curelgmd.com/important-links

LOOKING FOR A DIAGNOSIS? If you have been diagnosed with LGMD, but have not yet been given a subtype (2i, 2a, 2b, etc), click on the link below to receive your FREE GENETIC DIAGNOSIS! THE STEVENSON FAMILY FUND.

research4rare.de

MD-NET - Research for Rare

http://www.research4rare.de/alumni/md-net

Research for Rare - Forschung für seltene Erkrankungen. STOP – FSGS. Zentren für seltene Erkrankungen. MD-NET – Muskeldystrophie Netzwerk. MD-NET ist eine deutschlandweite, vom BMBF geförderte Arbeitsgemeinschaft zur Verbesserung der medizinischen Versorgung von Menschen mit neuromuskulären Erkrankungen (Förderkennzeichen 01GM0887). Von 2003 bis einschließlich 2012 wurden umfangreiche Strukturen zur Förderung von Grundlagenforschung, Diagnostik und zur Etablierung von Klinischen Studien geschaffen&#4...

lgmd2i.com

FKRP - Limb Girdle Muscular Dystrophy 2I

http://www.lgmd2i.com/fkrp.html

Limb Girdle Muscular Dystrophy 2I. FKRP (Fukutin-Related Protein) is the gene that is responsible for LGMD2I. There are several different possible mutations within the FKRP gene that will result in a different disease presentation and progression. MDC1C (a severe congenital muscular dystrophy), Walker-Warburg syndrome,. Muscle-eye-brain disease, a severe form of LGMD2I, and a mild form of LGMD2I. It has become evident that LGMD2I is one of the more common LGMDs in the United Kingdom, Denmark, and Brazil.

lgmd2i.com

Limb Girdle Muscular Dystrophy 2I - Blog

http://www.lgmd2i.com/blog.html

Limb Girdle Muscular Dystrophy 2I. Article about Carbon Dioxide retention in MD. 8203;http:/ www.ncbi.nlm.nih.gov/pubmed/20113985/. Great article about LGMD. Limb-girdle muscular dystrophy isn’t one disease but a group of rare disorders affecting voluntary muscles – mostly around the hips and shoulders. There are more than 30 different subtypes of limb-girdle muscular dystrophy identified, and the list grows each year as more and more research is completed. 8203;Read the full article at:. New insights in...

lgmd2i.com

Resources - Limb Girdle Muscular Dystrophy 2I

http://www.lgmd2i.com/resources.html

Limb Girdle Muscular Dystrophy 2I. Below are website links that I have found helpful:. It is essential that we have everyone with an FKRP mutation register so we can identify patients when clinical trials become available. Http:/ www.fkrp-registry.org. Websites and FB group breathing with neuromuscular disease. Http:/ www.breathenvs.com. Http:/ www.muscle.ca/living-with-muscula…/respiratory-care/…. Https:/ www.facebook.com/BreatheWithMD. Relevant Scientific Research Papers. Limb Girdle 2I Research Fund.

lgmd2i.com

Limb Girdle Muscular Dystrophy 2I - Limb Girdle Muscular Dystrophy 2I

http://www.lgmd2i.com/lgmd2i.html

Limb Girdle Muscular Dystrophy 2I. To meet others with LGMD2i join the 2i Facebook Group. If you have LGMD2i or an FKRP mutation, please register at The Global FKRP Registry. The FKRP registry, is an international registry that collects genetic and clinical data about persons affected by conditions caused by mutations in the. Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type 2I ( LGMD2I. And the rarer conditions Congenital Muscular Dystrophy ( MDC1C. Muscle Eye Brain Disease ( MEB.

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fkrp-registry.org

Home - Global FKRP Registry

The Global FKRP Registry is an international registry that collects genetic and clinical data about persons affected by conditions caused by mutations in the. Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type 2I ( LGMD2I. And the rarer conditions Congenital Muscular Dystrophy ( MDC1C. Muscle Eye Brain Disease ( MEB. And Walker-Warburg Syndrome ( WWS. Patients from anywhere in the world can register. Since patients with FKRP mutations are rare, every single person counts!

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