A major survey is being undertaken across the UK and US into the experiences of people like us with Rare Diseases. The findings of the research will guide future research and education, so if you can spare 10 minutes to complete the survey, please click on the link below or copy and paste it – once on the site, you will see the link for the survey:
http://globalgenes.org/rare-disease-impact-study-us-uk/
BUS is a member of Rare Disease UK, an overarching body that lobbies for better services for those of us with rare diseases. Rare Disease UK is supporting this survey and has sent us a short plea and summary of the research project which I have attached below. Please, please help us spread the word, and get our disease better known!
There is still an urgent need to better understand the rare disease community and the needs of the patient and medical communities. This is why Genetic Alliance UK and Rare Disease UK have decided to participate in an initiative being led by Shire Human Genetic Therapies that will help to identify and bring increased awareness to the myriad of issues facing the rare disease community.
Shire is surveying patients, carers, physicians, payors and thought leaders in the UK and the United States to identify and quantify some of the major health, psycho-social, societal and economic impacts of rare diseases. Survey results will be published in a Rare Disease Impact Report this year and we believe the findings from this Report will truly help guide future research and education for affected patients and their families.
Please send this survey on to those in your organisation affected by a rare disease. The survey is aiming to close by early February.
If you have 10 minutes to spare, we are interested in hearing about your rare disease experience – either as a patient living with a disease or as a carer of someone with a rare disease.
We want to capture as many survey responses as possible to gain insights from a multitude of voices. We hope you will join us in this important undertaking.
Kind Regards,
Alastair Kent OBE
Chair of Rare Disease UK
Unfortunately the survey is only able to be completed by those resident in the UK and the USA. I live in Ontario, Canada and would welcome an opportunity to take part in the survey. I know that there are at least 35 people with Birdshot in the greater Toronto area alone, so there is a population that needs to be studied in Canada at large. Hopefully that will happen in the near future !
Regards,
Marie
Hi Marie
You are so right. Not only is there a large population of Birdshotters in Canada, but also in Europe, Australia, New Zealand, South Africa, etc. The sooner we can get truly international agreements, the better! If you lobby your end for this, I will continue to lobby my end.
Rea