This week, I celebrated my fourth year at Findacure. What a whirlwind it’s been! In that time, I’ve held three job titles, worked with seven different colleagues, planned well-over 30 events, and changed my hair colour more times than I can count. In this week’s blog, the team asked me to look back at my first presidential term four years and share some of my hopes for the next.
This week, we take a look at the Findacure RareChat sessions that have been running throughout lockdown that offer a chance for patient group representatives to have informal chats, network and share resources and experiences.
This week’s blog is guest written by Robyn Silverton, a holistic therapist and trained physiotherapist who also has the rare condition of PK deficiency, a haemolytic anaemia of which there are 1 in 200,000 patients worldwide. Robyn shares some of her story and what keeps her positive in the face of the challenges associated with having a rare disease.