World Scleroderma Awareness Day is observed on June 29 to raise awareness of this rare autoimmune disease that affects connective tissue, skin, and internal organs. The day also highlights the importance of early diagnosis, patient support, and medical research. Scleroderma, also known as systemic sclerosis, is a rare autoimmune connective tissue disease

International Phenylketonuria (PKU) Awareness Day is observed annually on June 28 to raise awareness about this rare but serious inherited metabolic disorder. The day emphasizes the importance of early detection, timely treatment, and lifelong adherence to a low-phenylalanine diet in order to prevent permanent damage to the brain and overall development.

International Dravet Syndrome Awareness Day is observed every year on June 23, with the goal of raising awareness about this rare and severe form of epilepsy, as well as providing support to those affected and their families. Dravet Syndrome (DS), also known as Severe Myoclonic Epilepsy of Infancy (SMEI)

World Motor Neurone Disease (MND) Awareness Day is observed every year on June 21. The aim of this day is to raise awareness about motor neurone diseases, such as Amyotrophic Lateral Sclerosis (ALS), Progressive Bulbar Palsy, Progressive Muscular Atrophy, Primary Lateral Sclerosis, and Progressive Pseudobulbar Palsy.

June 12 has been designated as Lamb-Shaffer Syndrome Awareness Day, a rare genetic disorder caused by changes in the SOX5 gene. Because the SOX5 gene is located on the 12th chromosome, the symbolic date of 12/6 was chosen. Lamb-Shaffer Syndrome is characterized by developmental delays, speech difficulties, ...

In June, we observe awareness days dedicated to the following diagnoses: myasthenia gravis, Loeys-Dietz syndrome, Batten disease, motor neuron diseases, Dravet syndrome, phenylketonuria, scleroderma, and arthrogryposis. June presents an opportunity to collectively highlight the importance of rare diagnoses and to show support for individuals who face these conditions every day. Through education, awareness, and a sense of community, we can contribute to improving the quality of life for those affected and their families.

June is Myasthenia Gravis Awareness Month – a time to raise awareness of this rare but serious disease that affects muscle strength and daily functioning. Specifically, on June 2nd, we observe European Myasthenia Gravis Awareness Day to inform the public, support those affected, and promote early recognition of symptoms.

This day is dedicated to raising awareness, providing support to those affected, and encouraging research for a better understanding and treatment of NF. Neurofibromatoses are a group of rare autosomal dominant inherited disorders that cause the development of tumors in the nervous system, and they also…

World Hereditary Angioedema Awareness Day (HAE Day) is observed on May 16th to raise awareness about this rare, hereditary disease. The goal is to promote timely diagnosis, better treatment, and support for those affected. Hereditary angioedema (HAE) is a rare genetic disorder that causes recurring episodes of swelling (angioedema) ...

Today, May 10th, we observe World Lupus Awareness Day, a day dedicated to raising awareness about lupus, an autoimmune disease that affects millions of people around the world. Lupus is a chronic autoimmune disease in which the immune system attacks the body’s own tissues and organs, causing inflammation and damage to the skin, joints, kidneys, heart, lungs, and brain.