Enfermedades Raras

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The Duchenne Timeline

This clinical progression created by Helen Posselt PT in Brisbane, is around 8 years old. For many today, these dreadful milestones will be thankfully delayed because of better treatment and care, most notably steroids and physiotherapy, cardiac and respiratory care. Around the world our scientists are working hard to refine a definitive strengthening treatment. But […]

Mastocytosis and Mast Cell Activation Syndrome

Mastocytosis and Mast Cell Activation Syndrome affect all systems, organs and tissues of the body. In particular, skin, liver, spleen, lymph nodes, bones and bone marrow, lungs, gastrointestinal system, eyes and blood are the most documented as adversely impacted by these diseases. Research exists but much more needs to be done to further identify and […]

Living with Dystonia and Chorea

This was kind of hard to post because it is quite embarrassing sometimes. But , if we don’t let people know it’s out here there will never BE A CURE !Ihave Dystonia and Chorea.I’ve just been diagnosed with the Huntington’s gene , but my markers are in ‘safe’zone. This is during one of my Dystonic […]