#WorldCDGConference: The most voted topic for the talk of Dr. Dolores Gamito’s was “Body-Mind-Emotion/Psychomotricity, the intervention that sees the child as a whole”.
Don't miss it at the 3rd World Conference on CDG 2017! Thank you for your opinion and participation!
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#RareDiseasesNews:Rare Diseases drugs development, marketing & pricing are always surrounded by mist. New challenges for phycians, patients, researchers, pharma & regulators.
How do we make the #OrphanDrug maket more effective to all stakeholders? Find out HERE #RareDiseasesNews:Patients and caregivers are experts on their conditions. How can collecting info directly from them speed up and improve the comprehension of a disease?
#MyMS is a great example of how patient's contributions accelerates research and solutions! #PatientCentricity Visit HERE to learn more #RareDiseasesNews: The first clinical trials ever using genome editing in vivo will begin shortly for #HunterSyndrome, #HurlerSyndrome and #HemophiliaB
Such exciting news! A progress from which #CDG may come to benefit hopefully very soon! Know more HERE #RareDiseasesNews: Silly Spin is an educational app that stimulates learning and development. It is the product of 2 rare moms' care, creativity and love 💚 #CDG If you use it, please comment! If you found it helpful, please share! #RareDiseasesNews: What is so special about the aortic implant PEARS / ExoVasc?
Well, it has been successfully used in 100 patients and was developed by another patient! Yes, that's right a Patient! #MarfanSyndromePatient Innovation Know more about this innovation HERE #RareDiseasesNews: A little boy was undiagnosed until the age of 4 and then in 1 day a geneticist solved a great puzzle. A new syndrome was discovered and a family finally got some answers.
There are still no therapies, the syndrome does not even have a name yet, but the diagnosis gave the family some confort and a path to follow! #DiagnosisMatters! Read the full story HERE |
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June 2018
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