#RareDiseasesNews: The Hidden Costs of Rare Diseases is a study done by the Genetic Alliance UK.
An important and highly informative work, providing information and awareness about the economic and psychosocial toll associated witha RARE Disease management.
Available in full at http://bit.ly/2fSv6FI
.#RareDiseasesNews: Check out the latest Global Genes Toolkit dedicated to support groups, advocacy and knowledge about RARE Diseases! http://bit.ly/2gTV8ti
May December bring you all the Presents you have wished for!
APCDG (www.apcdg.com) will continue preseting the CDG Community with innovative Research projects until this year comes to an end!
#BiocomesticforResearch NABIA (http://bit.ly/2fjLn84) soaps are handmade with natural ingredients that give them their beautiful colours. This soap with red tones is made with red wine and acorn, which means that it has great anti-oxidant properties. Protect and pamper your skin, by doing that you will also be protecting CDG Lives! #SupportCDGResearch! Email: email@example.com
#RareDiseasesNews: TODAY is International Day for People with a Disability.
Let's us strive to Achieve 17 Goals for the Future We Want!
#BeAble #AllDifferentAlltheSame http://bit.ly/1wyGqsW
CDG patient advocate, Dr Vanessa Ferreira, was selected among 600 candidates to integrate the European Health Parliament.
The European Health Parliament is a platform of 55 professionals from across Europe, who volunteered to work together with the aim of changing the future of the healthcare in Europe.
They meet with key stakeholders and share their ideas with policy-makers, NGOs, media and interested general public, with the aim of delivering high-level policy-oriented recommendations that will change the future of healthcare in Europe.
Write something about yourself. No need to be fancy, just an overview.