News from the Rare Disease and Limb Difference community this week
Rare diseases such as dysmelia are often under-served by the medical and research professions. We hope at DysNet to help bring about change in this area, along with rare disease organisations such as EURORDIS and NORD.
We have some very interesting stories from the week's news from both the rare disease and limb difference communities - take a look below!
- Reach Charity: Within Reach Magazine is back!
- Spanish Holt Oram Association: Nuevo proyecto de necesaria participacion. ENFERMEDADES RARAS, HISTORIAS COMUNES (New Holt-Oran project requires participation. Rare Diseases, Common Ground)
- DysNet: Meet the Expert: Dr Neil Vargesson, expert in dysmelia.
- This is Cornwall:Beach access in Cornwall is being improved for the disabled
- MSNBC: Noninvasive prenatal tests for more RareDisease coming soon.
- The Douglas Bader Foundation - Please join in their 30th Anniversary Celebrations
- Office of rare Disease research: Tips for finding experts in your RareDisease. It means travel but patients want docs who've seen other cases
- Global Accessibility News: World Summit on Tourism, Culture and Transportation 2014 for Persons with Disabilities in Montreal
- DysNet: Spotlight on: Jessica Cox, black belt, pilot, speaker - all those achievements despite "disability"
- LivingOneHanded Blog: How To Play Volleyball One-Handed
- BMA: How a virtual network is providing vital support for #rarediseases patients
- KunstArm weblog: RSLSteeper's preview van de bebionic3 prosthetic hand
Tags: limb difference dysmelia dysnet rare connect EURORDIS rare diseases News