Worldcdg.org

Quality of Life World CDG Organization

Health related quality of life (HrQoL) is the health aspect of QoL that focuses on people’s level of ability, daily functioning and ability to experience a fulfilling life. It can be also described as the evaluation of the impact of the health status in domains related to physical, mental, emotional, and social functioning.

Actived: 3 days ago

URL: https://worldcdg.org/quality-life

Guidelines for CDG care and management World CDG Organization

WEBGuidelines for best practices in clinical care are becoming more and more useful tools for both patients and health care professionals in a number of disease areas. Clinical …

Category: Health Go Health

Epidemiology World CDG Organization

WEBThe word epidemiology comes from the Greek words epi, meaning on or upon, demos, meaning people, and logos, meaning the study of. In other words, the word …

Category: Health Go Health

Home World CDG Organization

WEBCDG and Allies publishes methodology to transform clinical management guidelines in lay language: a pioneer advance to empower and improve care for CDG families, and …

Category: Health Go Health

Epidemiology in rare diseases World CDG Organization

WEBIf you wish to know more about the epidemiology of CDG, the CDG&Allies-PPAIN team made a toolkit available for the community, consisting of a literature review …

Category: Health Go Health

What to look for

WEBBecause health misinformation is a serious threat to public health, because can cause confusion, and mistrust, harm people’s health, and undermine public health efforts, …

Category: Health Go Health

Signs and symptom World CDG Organization

WEBAccept. As you now know, glycosylation is related to many cellular processes, organs and systems of our body. Hence, CDG are commonly multisystem diseases, i.e., multiple …

Category: Health Go Health

Immunology in CDG World CDG Organization

WEBThe Site cannot and does not contain medical or health advice. The information is provided for general informational and educational purposes only and is not a substitute for …

Category: Medical Go Health

Understanding Clinical trials World CDG Organization

WEBThe Site cannot and does not contain medical or health advice. The information is provided for general informational and educational purposes only and is not a substitute for …

Category: Medical Go Health

Epidemiology in CDG World CDG Organization

WEBIf you wish to know more about the epidemiology of CDG, the CDG&Allies-PPAIN team made a toolkit available for the community, consisting of a literature review regarding the …

Category: Health Go Health

Rare Disease Day World CDG Organization

WEBAccording to the National Institutes of Health (NIH) there are more than 7,000 rare diseases. Wakap et al. (2020) say that there are 6,172 different rare diseases. Of the …

Category: Health Go Health

Gene therapy World CDG Organization

WEBGene therapy is a type of treatment that “corrects” patients’ genes to potentially treat or prevent diseases. The faulty gene is replaced with a copy of a healthy gene using a …

Category: Health Go Health

How and where to look

WEBEducating yourself about CDG is vital. The internet can be a great resource. Although, online information and related resources should be viewed with caution. And accurate …

Category: Health Go Health

Acetazolamide World CDG Organization

WEBAcetazolamide is a medicine used to treat glaucoma (a group of eye conditions that damage the optic nerve, vital for good vision). It is also used to treat ataxia, one of the major …

Category: Medicine Go Health

Understanding Clinical trials > I want to learn about Clinical Trials

WEBScreening trials test the best way to detect certain diseases or health conditions.; Quality of life trials look for ways to improve the comfort and quality of life for people.; Genetic …

Category: Health Go Health

World CDG diagnostic and research map

WEBThe Site cannot and does not contain medical or health advice. The information is provided for general informational and educational purposes only and is not a substitute for …

Category: Medical Go Health

Introduction to Real-World Data & Evidence

WEBWhat data is collected? Nowadays, RWD can be acquired in different forms by numerous means, such as Electronic Health Records (EHRs), Electronic Medical Records (EMRs), …

Category: Medical Go Health

Understanding Clinical trials > I want to participate

WEBPeople want to take part in health or social care research for many reasons: To improve health and social care for others, as well as giving hope for future generations. To learn …

Category: Health Go Health

Resilience World CDG Organization

WEBAccording to the American Psychological Association (APA), resilience is the ability to successfully adjust to severe life circumstances, by being flexible and adapting to …

Category: Health Go Health

Empowerment for All World CDG Organization

WEBAs you’ve seen, Health Literacy is an essential part of Healthcare, Research and People’s lives. Since Health Literacy can be a rather complex subject, we’ve …

Category: Health Go Health

Galactose World CDG Organization

WEBAbout SLC39A8-CDG: is a rare and severe inherited autosomal recessive condition which affects many organ systems simultaneously. SLC39A8-CDG primarily affects the …

Category: Health Go Health

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