
Rhoda Walker
@rhodajwalker
Family girl, people person, EDSer, community development facilitator and volunteer. Swing dancer, music lover, absorber of weird facts, joiner of dots
ID: 536801283
25-03-2012 22:55:21
419 Tweet
117 Followers
234 Following





Patient advocacy can be hard with an invisible chronic illness that’s also fatiguing & causes brainfog. Maggie Buckley winner of the The Nancy Rogowski Advocate of the Year Award The Ehlers-Danlos Society this year shared her advice. Full interview in thread.





Can you imagine the impact of losing a sibling! For two amazing people I know, Bill (in the video) & Lucy, the @M4RareDiseases CEO, it has driven them to change the status quo for people with rare. 🦓💪💛 #1in17 #rareaware #daretothinkrare #rareni Genetic Alliance UK Cambridge Rare Disease Network (CamRARE)

Mae Murray Foundation is making beaches across Northern Ireland more accessible. It provides beach wheelchairs and walking frames to allow disabled people to enjoy the seaside. Vote for them in the #NLAwards by tweeting #NLAMaeMurray. Mae Murray Foundation supported by Sport NI. [9/18]
![National Lottery Good Causes (@lottogoodcauses) on Twitter photo Mae Murray Foundation is making beaches across Northern Ireland more accessible. It provides beach wheelchairs and walking frames to allow disabled people to enjoy the seaside. Vote for them in the #NLAwards by tweeting #NLAMaeMurray. <a href="/maemurrayfdn/">Mae Murray Foundation</a> supported by <a href="/_SportNI/">Sport NI</a>. [9/18] Mae Murray Foundation is making beaches across Northern Ireland more accessible. It provides beach wheelchairs and walking frames to allow disabled people to enjoy the seaside. Vote for them in the #NLAwards by tweeting #NLAMaeMurray. <a href="/maemurrayfdn/">Mae Murray Foundation</a> supported by <a href="/_SportNI/">Sport NI</a>. [9/18]](https://pbs.twimg.com/media/F5uyH9JXIAAcum3.jpg)

Let’s share this far and wide Michaela Hollywood MBE PKU UK & Ireland Carol McCullough 🦓 ⚡🐬🗿 @speccymcspec An Fear Ciúin Carers NI Christine Collins MBE IPPOSI Andrea Curtin PKU Association IE Rare Disease UK Genetic Alliance UK MSA Trust Health Research Charities Ireland - HRCI Alison McCaw Rhoda Walker
