Paulo Fontoura’s Post

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Experienced Pharma R&D Executive, physician-scientist with a passion to create new medicines

Rare diseases need our attention, not just on Rare Disease Day. Recently published research from SMA Europe and Roche benchmarks care for adults living with spinal muscular atrophy (SMA) across Europe. It provides a comprehensive analysis of the situation faced by a group that makes up 50% of the SMA population. The key takeaway? While innovations in care are changing lives, not enough is being done for adults with SMA, who still face significant challenges. The findings underscore the urgent need for a holistic approach to SMA care, one that supports individuals at all time points throughout their lifetime. Despite the need for improvements, there are clear examples of best practice care for adults with SMA being implemented by healthcare professionals, policy makers and patient groups around Europe, demonstrating encouraging opportunities for progress. For those looking to dive deeper into the findings, please visit https://lnkd.in/grkSNEin. It's time to push for improvements in care for all those affected by SMA. #SpinalMuscularAtrophy #SMA #RareDisease

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Thank you for sharing Luis' interview which is so relevant to our SMA community!

Flaminia Macchia

Head, Global Rare Disease Policy

1mo

Absolutely! And the same goes for adults and ageing populations living with rare diseases broadly.

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Inder Jaggi

CEO @Clinakos | Healthcare Data Enthusiast | Medical AI/ML | Hiring |

1mo

Thank you for sharing this, Paulo Fontoura.

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