FSRG announced recently that eight organisation had primary listings and syndicated information from one organisation had reached many more organisations. The organisations with primary listings are as follows: National Organization for Rare Disorders (NORD), MinnesotaHelp.info, National Cleft & Craniofacial Awareness & Prevention Month (NCAPM), Canadian Directory of Genetic Support Groups, Genetic Alliance, Birth Defect Research for Children, Iowa COMPASS Disability Information & Referral, and most recently National Health Information Center (healthfinder.gov). As of 28 June, Google returned 87 'unique' results fo a search of FSRG's proper legal name. FSRG Secy. MI Poling said, 'This is a good sign and very encouraging--people are taking us seriously and putting our information out there so we can help more people.'
As part of FSRG's recently stepped-up visibility efforts, officers have been contacting targeted organisations specifically that may have had a listing for the former FSPSG, FSS, both, or other relevant information and asking them to list FSRG. They have also offered to develop specific information on FSS for each organisation and keep it up-to-date. Poling continued, 'There is a lot of inaccurate and out-right untrue information out there about FSS, and we need to correct that. We are putting a lot of effort into correcting this information void right now, having heard that this lack of correct information also seems to be confusing the medical professionals caring for patients, which could plausibility impede care. That's the last thing we want.'
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