#RareDiseasesNews: Can India revolutionize #PrecisionMedicine? Well, having 1.3 billion human genomes, gives them an incredible head start 🤔
What do you think? More HERE
#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
#RareDiseasesNews: They are bloggers,they are disabled, they are beautiful, they are trendsetters... You should check-out their advice!
Vist HERE to know more!
#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!
#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
#RareDiseasesNews: What is research?
How can it help us? How is it done?
#PatientCentricity - the new research model!It's all about YOU!
#RareDiseasesNews: Easier, cheaper, faster access to #OrphanDrugs is needed!
The Aussies are giving the world a wonderful example
Read the full article HERE
#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
#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
#RareDiseasesNews:Celebrating a victory for #EpidermolysisBullosa patients & for #RareDiseases' treatments! #StemCellTherapy
Know more HERE
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