Blog Archives

Are genomes India's greatest treaure?

30/6/2017

#RareDiseasesNews: Can India revolutionize #PrecisionMedicine? Well, having 1.3 billion human genomes, gives them an incredible head start 🤔
What do you think? More HERE

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Blindness gave this Rare Mom a new vision

30/6/2017

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#RareDiseasesNews: Rare Parenting: The journey of grief, expectations, adapting and accepting. How the blindness of her 2 sons gave her a new life vision! #LCA

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(Disabled) Beauty bloggers

30/6/2017

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#RareDiseasesNews: They are bloggers,they are disabled, they are beautiful, they are trendsetters... You should check-out their advice!
Vist HERE to know more!

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Europe creates the world's largest data repository for research

30/6/2017

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#RareDiseasesNews: Big data - where are we going to store it all? Europe advances a solution! The biggest shared data repository for researchers.
How can it impact #RareDiseaseResearch?
Share the news and your thoughts!
More HERE

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The photo that changed the life of a Rare Iranian Family

30/6/2017

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#RareDiseasesNews: This photo shows the despair of an Iranian Rare Disease Family.
It also convey courage, persistance (common features of the Rare DIsease Community) and has an happy ending!
Learn more about this amazing story #MPS
Ready the full story HERE

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What is Research?

30/6/2017

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#RareDiseasesNews: What is research?
How can it help us? How is it done?
#PatientCentricity - the new research model!It's all about YOU!

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Orphan Drugs' Access: The Aussies set the example!

30/6/2017

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#RareDiseasesNews: Easier, cheaper, faster access to #OrphanDrugs is needed!
The Aussies are giving the world a wonderful example
#MorquioSyndrome #LifeSavingDrugsProgram
Read the full article HERE

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Camping with a tubie

30/6/2017

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#RareDiseasesNews: With the sun shinning outside, have you made plans for your weekend? Does a camping trip sound appealing? But, how could you when your child needs to be tub fed? HERE's how!
If you found it helpful please like & share! Also, share your experience with us!
Thank you! #CDG

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The secrets of Rare Disease Parent Advocates get revealed

23/6/2017

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#RareDiseasesNews: Global Genes has set up a new challenge for all Rare Disease Parent Advocates out there:
In one sentence, what is a secret you want to share? #CDG
More about this initiative HERE