ºÝºÝߣ

rare disease eurordis rarediseases raredisease rareconnect rare disease day patients social media emm 2011 conference 13 14 may 2011 congenital disorder spina bifida folic acid neural tube defect onlinecommunities rare diseases health genetic disorders eurordis membership meeting amsterdam networks of experts centres of expertise council of europe european conference on rare diseases fda ema rareconnect.org orphan drugs adverse events ulrike pypops membership meeting amsterdam yann le cam side effects pubmed quality medical information pregnancy clinical trials drug development search eurordis membership meeting 2011 amsterdam tsveta schyns domenica taruscio geneticdisorders europeanorganisationforrarediseases raredisorders twitter patientgroups patientrepresentatives rare disorders careforrare ecrd2016 global genes nord rare familialhibernianfever rarediseaseday tumornecrosisfactorreceptorassociatedperiodicfever periodicfeversyndrome autoinflammatoryalliance autoinflammatory traps euorordis pitthopkins pitthopkinssyndrome onlinecommunity eq-5d conditions and diseases quality of life hydrocephalus european union orphan drug avril daly eurordis membership meeting 2011 amsterdam 13 & 1