Welcome

NEW MEMBERS, NEW FAMILIES

Caetano, Tamapa, Defne, Tami,Yusuf, Tracey, William, Atay Robin, Sunusi, Hanna, Umar, Jo, Sarah, Talita, Randi, Carol, Eli, Gina, Sonia, Maria, James, Ayyaz, Mariya and Oluhle have joined us since the beginning of 2020.

 

Koweit, Dubai, Sierra Leone, Nigeria and South Africa are the additional colors on our map of world..

 

We now gather together 440 patients worldwide. Of them, 18,6 % have a Dominant type (ADCL) , 17,1 % a Recessive type (ARCL), 22 % an Acquired one and 40% do not know, or not yet, their exact type. The other types (MACS, OHS, GO,…) represent 2,3% of the total.