Hi my name is Terence Hoey and I am CEO/Founder of The Ultra Rare Disease Disorders And Disabilities Foundation we are a charity our cause is huge we want research into rare and ultra rare diseases we also want drug companies to cut the cost of drugs for rare and ultra rare diseases.
The charity was set up 3 1/2 years ago we are now seeing the green shoots of our hard work the internet is now coming down with groups who are now talking about rare and ultra rare disease it has been hard to get where we are it took many hours on the computer blogging and telling our story about our grandson who has one rare disease and one ultra rare disease.
Our work is not finished and we need your support we need to hear from more people who have child with a rare or an ultra rare disease we need help to set up a world wide network of families who have a child or children with a rare or ultra rare disease we need to know how many people in the world has a rare or an ultra rare disease you can contact me by email my email address is firstname.lastname@example.org or you can write to me @
Terence Hoey CEO/Founder The Ultra Rare Disease Disorders And Disabilities Foundation 86a Palmerston Road Sydenham Belfast Northern Ireland BT4 1QD Co Antrim
Please be part of bringing down the price of drugs for rare and ultra rare disease