
Share4Rare
@share4rare
๐ป๐ Collective platform dedicated to promote research in #RareDiseases ๐ | Tweets en espaรฑol: @Share4Rare_es | Coordination: @IRSJD_info
ID: 928582907949715456
https://www.share4rare.org 09-11-2017 11:19:52
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โ๏ธ People with ๐ซ๐ฒ๐ฟ๐ผ๐ฑ๐ฒ๐ฟ๐บ๐ฎ ๐ฝ๐ถ๐ด๐บ๐ฒ๐ป๐๐ผ๐๐๐บ have extreme sensitivity to #ultraviolet radiation, leading to severe #skin affectations. ๐ At #Share4Rare, we created a medical book with the collaboration of ASOCIACION XERODERMA PIGMENTOSUM Espaรฑa ๐ share4rare.org/library/xerodeโฆ


๐ก Did you know there is a specific #EuropeanReferenceNetwork for rare ๐ป๐ฒ๐๐ฟ๐ผ๐บ๐๐๐ฐ๐๐น๐ฎ๐ฟ ๐ฑ๐ถ๐๐ผ๐ฟ๐ฑ๐ฒ๐ฟ๐? ern euro_nmd is a network of healthcare centres that works to boost research and improve the standards of care for these pathologies ๐ share4rare.org/news/euro-nmd-โฆ


