The holiday farm that’s accessible for everyone whatever your disability

lad with hen

The Papworth Trust helps to support people with disabilities live their lives to the full. Today we’re helping them tell everyone that their accessible holiday farm, Kerry Farm in West Wales, which provides support and respite for people affected by … Keep Reading…

#RareDisease Day: Impossible situations create remarkable people

wristband2

Today is Rare Disease Day and during the past week we have been featuring a number of families who have been affected by rare conditions. Even if you’re not especially interested in the field as a whole, you cannot fail … Keep Reading…

#RareDisease Day: Our daughter’s devastating diagnosis changed every aspect of our lives

Patricia Amelie

Today’s article featuring a family affected by a rare disease brought a strange coincidence. On Wednesday, when I was at the Rare Disease UK reception to mark the yearly Rare Disease Day, the reason for this series of articles, I found … Keep Reading…

#RareDisease Day: Our quest for answers for our daughter’s mystery illness

ava

When you have a baby, you expect that raising them will bring some ups and downs.  But for Laura Joliffe and her husband Graham, life with their daughter Ava has been a rollercoaster since she inexplicably began to regress in … Keep Reading…

#RareDisease Day infographic and talking parent/patient advocacy

rare disease infographic

As I’m a fun kind of gal, yesterday I watched the livestream of the #rareEU2015 meeting in Brussels held by EURORDIS, Europe’s rare diseases patient advocacy alliance. Well, listened to the stream in the car for some of it, as … Keep Reading…