14/10/2024
Did you know (Approx.) 35% of children with a Rare Disease will pass away before their 5th Birthday!😥
Did you know the average Diagnostic Odyssey is 7-9 years! 🤯
Who supports these families through this journey? Who is there at 2am when they're world is crashing down, their 5 year old is screaming and the child can't tell they're parent what's wrong because they have a severe Intellectual disability, they're non-verbal and they're medically complex?
OTHER PARENTS ARE! PEER SUPPORT ISNT A 9-5! IT'S A COMMUNITY OF PARENTS THAT ARE 24/7.
Who connects these parents?
Syndromes Without A Name (SWAN) Australia 🥳
Has a wonderful Grant Through Ethical Jobs where they are matching Dollar for Dollar up to $9K from 10/10 to 17/10.
The Double Donation ends in 2 Days - This Thursday at 12pm (NOON) AEDT!
Every Dollar Counts! Donate $5, Automatically doubles to $10! Donate $50, Doubles to $100!
Help families of children with Undiagnosed or Rare Genetic Conditions THRIVE through peer support, connection and advocacy.
Donate Here:
https://chuffed.org/project/ethicaljobs-swan-matched-donations
