DO YOU LIVE WITH A RARE DISEASE?
Patients, parents and other family members are invited to participate in this survey by EURORDIS, looking at the social care and coordination of care need.
The results will help EURORDIS and Rare Disease UK to advocate for better care and support for people living with a rare disease in Europe. Please share this with others who might also be interested.
DON’T FORGET TO REGISTER FOR GENETIC ALLIANCE UK’S ANNUAL
Genetic Alliance UK (our parent charity) will be holding a conference to celebrate successful partnerships in the rare and genetic sector. It will be a great opportunity to hear from Deputy Chief Medical Officer, Dr Gina Radford, who holds the post of Champion of Rare Diseases in England.
You’ll also be able to hear from experts in the field including the Director of Specialised Commissioning at NHS England, Dr Jonathan Fielden.
Find out more here.
WHEN YOU CAN’T TRUST FOOD
Imagine what life is like if your primary relationship with food is distrust. In this guest blog, Jill Prawer talks about Familial Lipoprotein Lipase Defiency and what the LPLD Association is doing to support patients of this rare condition.
ROALD DAHL 100 TEA PARTY
BCH is hosting a Marvellous Superstar Club event for children, young people and families affected by rare and undiagnosed conditions.
11am to 2pm, Saturday 10 September 2016
Birmingham Children’s Hospital (BCH)
Further details here.
INSIDE THE ETHICS COMMITTEE
Last week the Radio 4 programme, Inside the Ethics Committee, examined issues around sharing of genetic information. They took a detailed look at Lynch Syndrome and Huntington’s Disease, but they issues they address - such as how to inform your family about their genetic risk of a condition - are applicable to many with genetic conditions. Listen here.
CYSTIC FIBROSIS TRUST CONFERENCE:
The Cystic Fibrosis Trust is holding a two day conference which will focus on the innovation happening within the field of precision medicines and what recent developments in personalised medicine will really mean for people with cystic fibrosis and their families.
Wednesday to Thursday, September 7th and 8th, September 2016
East Midlands Conference Centre, Nottingham.
More details here.