Blog Posts

Facing the grief by a #CDG Mom

6/10/2017

#RareDiseasesNews:There are times when #SpecialNeeds parents and caregivers just feel overwhelmed, negative with their heads filled with What Ifs that either lead to the darkest possible scenario or to a dead end of frustration/saddness/anger.
The advice of this special Mom is "Go there if you have to, but be brief. And always come back. "We agree with her 100%! What about you? #CDG 👌💚
Read it all HERE

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CDG&Allies-PPAIN most recent publication on patient needs, patient-led solution, patient-centred care and research

29/9/2017

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#CDGPublication: Another CDG&Allies-PPAIN publication has been published!👌👏🎉
This project was led by Dr Cláudia Freitas and, like all CDG&Allies-PPAIN projects, co-led and inspired by the CDG Community! This project reinforces the fact that a patient-centered approach is the most effective way to improve care and research for CDG (or any other disease for that matter). You can access the article's abstract HERE and to get a full copy write to sindromecdg@gmail.com.

Thank you so much to the entire CDG Community for answering present and available any and every time we ask!

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Creating a therapeutic schedule for your Child

29/9/2017

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#RareDiseasesNews:How to organize yourself and your child's therapeutic and stimulatory activities, when your child has a complex and multi-systemic condition?
It may seem your time management or prioritizing skills may not be up to the herculous task, but that's just your perfeccionism talking.
Anyway, here is a strategy that can enable EVERYONE to accomplish #CDG
What do you think? Do you have other strategies?
Share, comment, like and know more HERE

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Being different: How has your child's disability changed you?

29/9/2017

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#RareDiseasesNews:"My child’s disability is not a disadvantage. It’s a different vantage point." How has your #SpecialNeeds child changed you? And his/her disability, how has it reshaped you?
Comment, like and share The Mighty
Read more HERE

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Job opportunities are essential for full social inclusion of people with disabilties

29/9/2017

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#RareDiseasesNews: "People with special needs are committed people and they want to work, and they want to contribute to society," that's why more job opportunities like these need to become a reality - FAST!
Learn more HERE #SocialInclusion #EqualOpportunities

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Talking (openly) about Rare Diseases

22/9/2017

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RareDiseasesNews: Instigating Rare Disease Patients and families to break the silence "We need people to talk about rare diseases like they are now learning to talk openly about mental health issues.". Putting an end to misconceptions, building a support network and raising #Awareness!
Visit HERE to know more.

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Non-verbal isn't synonymous to no thoughts, feelings or preference

22/9/2017

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#RareDiseasesNews: When your child is non-verbal making sure people understand him/her is a constant worry "Does the world see him as unintelligent? Does the world view him as someone who doesn’t understand?".
Read the testimony of a #CDG Mom and share your experience - How do you appease those nagging and troublesome thoughts?💚
Full chronicle HERE

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Rare Disease Film Festival countdown

22/9/2017

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#RareDiseasesNews:Disorder, the Rare Disease Film Festival is close to its debut.
Have a sneak peek! If you are not participating this year,you might be tempted to do it next year!
More HERE 📽️🎬

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Patient Reported Outcomes - Much more than questionnaires

15/9/2017

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#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

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Communicating with a non-verbal child

15/9/2017

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#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!💚