#RareDiseasesNews:How can patients' actively participate in clinical research?
One of the most relevant answers is Patient Reported Outcomes (PROs).
Know more about these validated and invaluable tools that are becoming indispensable in clinical trials👩🔬👨⚕️
For more information go HERE
#RareDiseasesNews:Understanding, talking to and stimulating your child's communication skills - this is a great concern and priority of families with non-verbal kids. An amazing testimony available now in Firefly podcast HERE
Like, share & comment! We would love to HEAR from you!💚
#CDGPublications: Your child has never done a cardiac check-up? Or only when he/she was really young? Is your GP reluctant to order those tests or do you feel your doctor does not know enough about CDG? Share with them CDG & Allies-PPAIN most recent publication on Cardiac Complications in CDG.
Find the abstract HERE and write to firstname.lastname@example.org to get a free copy.
Together we will overcome every obstacle!💚
#RareDiseasesNews:Sensory-issues, behaviour-issues, physical and/or mental disabilities not only frequently imply adaptive clothing, but many times also make the process of buying clothes an arduous task. The beginning of a new school year often means buying new clothes, maybe also an uniform.
What's your experience with it? Share your tips and experience!
Find out more HERE
#RareDiseasesNews: For some school has already started, while others are on the verge of a new school year. Parents are struggling with lists of school supplies.
That's why we share a list of 12 back to school items that will improve your child & yours schooling experience! 👩🎓👨🏫 #SpecialNeeds
Access the list of materials HERE
#RareDiseasesNews: 5 great tips to get your child to find his/her own voices - Promoting development of communication skills! Have you ever used any of them?
Find them helpful? Comment, like & share!
More information HERE
#RareDiseasesNews: A message to the non-disabled community from people w/ disabilities - Educate yourselves about disability, because "The more the nondisabled know, the more people with disabilities will be included in daily life."
If you agree with this message, share this post! Spread #Awareness! ♿👨🏫👩🎓
Read the article in full HERE
#RareDiseasesNews:Mia Lee is Wheeling Through Middle School - a book whose main character is a girl w/ disability.♿
How important is it to have heros with all types of abilities? Do you have a favourite inclusive book?
Share it with us!
Know more about this book HERE
#CDGPublications:Have you read the recent CDG & Allies-PPAIN scientific paper on Cardiac complications in CDG? We dare you to read it, share it with your GP and spread the word! Heart diseases occur in 20% of all CDG and cardiac-related complications are strongly associated with mortality in CDG.
Access the abstract HERE get a full copy by writing to email@example.com
Write something about yourself. No need to be fancy, just an overview.