IMPACT OF RARE DISEASE SURVEY
EURORDIS has launched a survey about the impact of rare disease on daily life. Specifically the survey looks at social care and coordination of care need. More information here.
ROALD DAHL 100 TEA PARTY
WHEN
11am to 2pm, Saturday 10 September 2016
WHERE
Birmingham Children’s Hospital
BCH is hosting a Marvellous Superstar Club event for children, young people and families affected by rare and undiagnosed conditions. Further details here.
ACCESS TO ADVANCED THERAPIES
Genetic Alliance UK has responded to the Innovative Medicines Initiative (IMI) concept paper looking at the key obstacles to European patients gaining access to effective advanced therapies.You can read the response here.
REVIEW OF PERSONAL INDEPENDENCE PAYMENTS (PIP)
The Department of Work and Pensions (DWP) has put out a call for evidence for feedback on how PIP is working. Having a rare disease can put an extra hurdle in place for people trying to claim benefits such as PIP. If you have claimed PIP in the past, please tell the DWP about your experience here.
SUPPORT GROUP VIDEO
To celebrate their 25th anniversary the Primary Ciliary Dyskinesia (PCD) family support group has created a video that displays the exceptional work that they do. The video is a great example of how support groups can change the lives of patients, and is well worth a look. Watch the video here.
A RARE DISEASE? I HOPE KNOT!
Scott Smith shares his families experience of rare disease, and tell us all about their green shoelace campaign on our blog.
‘MY METABOLIC JOURNEY…’
Free online photography workshop for teenagers living with a metabolic disease. This will be an opportunity to work with Ceridwen Hughes from Same But Different, and to have your pictures appear in an exhibition at Climb’s conference and at an exhibition in the Houses of Parliament.
No experience or equipment required.
For more info contact Climb 0845 241 2173 or ■■■■■■■■■■■■■■■■■■
HEALTH DATA
Genetic Alliance UK has looked at the issue of health data, consent and security for rare disease patients in a blog for Special Needs Jungle. You can read this here.
Rare Disease UK is a campaign of Genetic Alliance UK. the national charity of over 180 patient organisations, supporting all those affected by genetic conditions.