Rare diseases

Why relationships are key in rare disease patient engagement

https://pharmaphorum.com/views-and-analysis/why-relationships-are-key-in-rare-disease-patient-engagement/

Growing up different and not knowing why: My experience of rare vascular disorder KTS

https://pharmaphorum.com/views-and-analysis/growing-up-different-and-not-knowing-why-my-experience-of-rare-vascular-disorder-kts/

World Orphan Drug Congress USA Virtual 2021

https://pharmaphorum.com/events/world-orphan-drug-congress-usa-virtual-2021/

Evrysdi has ‘real world impact’ on lives of babies with severe SMA, says Roche

https://pharmaphorum.com/news/evrysdi-has-real-world-impact-on-lives-of-babies-with-severe-sma-says-roche/

Alexion’s Camilla Harder Hartvig on making the impossible possible in rare disease

https://pharmaphorum.com/views-and-analysis/alexions-camilla-harder-hartvig-on-rare-diseases/

Making a big impact in small patient populations

https://pharmaphorum.com/partner-content/making-a-big-impact-in-small-patient-populations/

How accidental advocacy is amplifying the GM1 voice

https://pharmaphorum.com/views-and-analysis/rare-disease-advocacy-is-amplifying-the-gm1-voice/

Why we need research into the mental health impact of a rare disease diagnosis

https://pharmaphorum.com/views-and-analysis/the-mental-health-impact-of-a-rare-disease-diagnosis/

Building a better future for people with rare diseases in all four UK nations

https://pharmaphorum.com/views-analysis-patients/building-a-better-future-for-people-with-rare-diseases-in-all-four-uk-nations/

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