Hi everyone hope we are all well, I'd like to introduce myself to everyone.
@DDDC3GUK facebook.com/DDDC3GUK/
Foremost full time DAD to two of the most amazing and much loved daughters, but then I would say that. Secondly Business owner.
Why am I posting on here ? Well !
In March 2013 my youngest daughter Abi at a young age of just 10 ! was suddenly stuck down with a disease called Dense Deposit Disease (DDD) She has been to date on a life roller coaster with the no brakes, apart from a rope in which one all pull to slow things down, but its hard boy it's hard! her full life as changed over this last 5 years ( our lives have changed ) C3G thank you.
I won't bore you with all the details, but happy to discuss at any time.
Since this day my wife and I have since set up a family support group to help and support other patients / families with our key goals to raise has much awareness of this nasty disease.
I'm Fonder & patient / caregiver advocate of DDD/C3G RENAL SUPPORT GROUP UK Very active Researcher & key goals in raising Awareness of #DDDC3G Ultra rare renal kidney disease affecting 1 to 2 children/Adults in every million.
Part time volunteer and charity fund raising advocate for Leeds Children's Transplant Team (LGI).
Patient advocate voice and board member for the EMA / NHSE / Clinical Research Network PPIE lead.
Active stakeholder on the structure of how and why NHSE all rare diseases policies are put together for the better of patients / caregivers.
Good to speak with everyone very soon & god bless.
Andy
Great reading your introduction, you are indeed a busy man. Hope you are all ok. Very exciting with this new group.