jueves, 29 de febrero de 2024

WORLD RARE DISEASE DAY 2024 - PEDIATRIC AND PRIMARY LYMPHEDEMA – Children with Lymphedema - Organic Lymphatic Vascular Disease - Lymphostatic Elephantiasis - Best Practices Management Guideline - Treatment Protocol - Patient Care Pathway


Approximately 300 million people are affected globally by 6000 to 8000 different rare diseases and in Europe more than 30 million. Many of these diseases manifest during childhood, and some are devastating and even life-threatening.

Primary Lymphedema is not only a rare but also a neglected disease in many countries, especially in the world’s poorest communities. As the case for most rare diseases, inaccessibility to Lymphedema treatment, or the implementation of low-cost alternative ineffective solutions, due to the health policies of some national systems, can cause disease progression towards the severe ELEPHANTIASIS stage, which means suffering serious infections, disfigurement, disability, loss of income, and even social discrimination for those affected. Read more about the symptoms and important complications of lymphoedema HERE.

Rare Disease Day is celebrated around the world on the 28 of February to bring awareness to conditions that often escape notice. The common thread between these diseases is their lack of knowledge among the general public and even in the healthcare field. While rare and neglected diseases take up different spaces in the health sphere, both experience a lack of awareness, research, and treatment funding.

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