Tania Tirraoro is the founder and CEO of the award-winning Special Needs Jungle website, which helps parents to advocate for their who have children with disabilities.
Before having her two sons, Tania worked as a TV journalist. However, when her youngest son was diagnosed with Reflex Anoxic Seizures and then both boys were diagnosed with Asperger syndrome, Tania began volunteering for the syncope charity, STARS as their PR and web officer.
As well as growing SNJ into the UK’s leading Special educational needs blog, Tania also works to help charities with their web presence, including building a global social network for a rare disease organization.
In 2012, Tania became chronically ill with Ehlers-Danlos syndrome, something that has also been confirmed in both her sons. Although this makes work difficult, she has volunteered for EDS UK and RareConnect, part of EURORDIS, the European rare disease organization. In July 2015, Tania was elected as a Trustee of Genetic Alliance UK, the charity that represents the views of its members (including SNJ) on all issues concerned with Genetics & Genomics at a strategic level.
Tania is very happy to now be the UK and Europe Adviser for The Ehlers-Danlos Society and hopes her previous experience can help the charity reach many more people with EDS across the world.