rare disease
- News
A Rare Reunion
From Tweetup to Meetup Rhys and Deb, 2019 It had been over three years since I’d first met my friend…
Read More » - Advocacy
Rare Disease Week 2019 on Capitol Hill
Living with Superficial Siderosis will be heading to Capitol Hill in Washington DC this weekend to join with fellow rare…
Read More » - Personal Stories
Meet Fiona Parkinson
Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her duties of tending her family’s small hobby farm,…
Read More » - Advocacy
When Small Details Equal Giant Victories
Superficial Siderosis Granted Compassionate Allowance Status The Superficial Siderosis community received validation this week as their status as rare disease sufferers’ was…
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