Maria Piggin, PNH Support Founder, explains:
Super Rare is about strength in numbers. Where those living with rare and ultra rare bone marrow failure conditions join together for the benefit for all our communities which separately are very small but together are stronger and louder!
The money you fundraise will help us to keep supporting those with PNH and their families including providing them with information, advocating on their behalf and making sure no one feels alone.
By donating, these funds could pay for us to hold a patient and family conference, host more face-to face meetings which are much needed especially after most of our community were shielding throughout the pandemic. Your donation could also ensure we have the capacity to answer patients’ questions as well as ensure they have all the most up-to-date information they might need. It could also help us gather data needed to evidence that new treatments being developed to address the symptoms of PNH are worthwhile and improve patients’ (and in turn their families) lives.
PNH Support has not been part of a fundraising campaign before because it is small and run by patient volunteers. We are looking forward to learning more about the fun and exciting things people are prepared to do to fundraise!