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Rare disease – my personal experience

Rare disease – my personal experience

by Pharmaguapa | Feb 28, 2021 | Autoimmune Disease, hashimoto's, Patient centric, Rare disease, Social Media

Today is rare disease day so I thought I would share my personal experience.  One of the reasons I am so passionate about working in rare disease is because of the experience I and my family have gone through. Churg Strauss Syndrome Years ago my mother got ill and got...
Rare Disease Day

Rare Disease Day

by Pharmaguapa | Feb 26, 2021 | Autoimmune Disease, General, hashimoto's, Patient centric, Rare disease, Social Media

It’s Rare Disease Day this weekend!  Every year the end of February sees this day focused on rare diseases.  The aim of the disease day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’...

Why social media is critical to rare diseases

by Pharmaguapa | Oct 15, 2019 | Facebook, Leadership, Rare disease, Reverse Mentoring, Social Media

Imagine feeling constantly sick or in pain.  Imagine going to doctor after doctor but still not receiving a suitable diagnosis or any idea of what is wrong with you.  Imagine being told you are making it all up or it is all in your head.  Imagine your life as this...

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