SHIRE Joins the Rare Disease Community at SSIEM
Our involvement at SSIEM
This week we are at the SSIEM congress in Rome to highlight the latest information on lysosomal storage diseases (LSDs). Events like the SSIEM (Society [...]
By Rare2Aware
In Advocacy & Awareness, Community, Fabry Disease, hae day :-), HAE Global Conference, HAE survey, HAEi, Hereditary Angioedema
Posted Understanding HAE this hae day :-)
Today, May 16, 2016, is hae day :-), a Global initiative from international patient group HAEi to raise awareness of hereditary angioedema (HAE) among the general public and medical community. [...]
By Rare2Aware
In Advocacy & Awareness, Angiokeratomas, Changes in the eye, Community, Fabry Disease, Hearing problems, Impaired ability to sweat, Patient Stories, Pedigree Analysis, Stomach problems
Posted Gina’s Story: The long walk to a diagnosis
Meet Gina, a 56-year old mother to E (Fabry patient), based in Ontario, Canada. After five years of jumping through hurdles she finally received a diagnosis of Fabry disease for her then [...]
Help us #FlyforMPS this International MPS Awareness Day
As a child, did you ever make paper planes and play with your friends outside? Well, here’s your chance to bring back your childhood memories while spreading awareness about [...]
