Rhoda Walker

Family girl, people person, EDSer, community development facilitator and volunteer. Swing dancer, music lover, absorber of weird facts, joiner of dots

[Forward South Partnership @ForwardSouthPB]

📢📢Open Botanic is back for 2024! 🎉🎉

Join us on Botanic Avenue on Sunday 15 September 2024!

Open Botanic is a free event with lots of games, activates, stall and food!
https://t.co/hJncSY5QVH

[Kerry Longmore @LongmoreKerry]

Let’s share this far and wide @KylaHollywood @PKU_UK_Ireland @Imonlyslightly @speccymcspec @RDFalls @CarersNI @Christinezoo @IPPOSI @22q11Ireland @PKU_Ireland @rarediseaseuk @GeneticAll_UK @MSAtrust @HRCIreland @bright_owls @rhodajwalker

[Rhoda Walker @rhodajwalker]

@KaiWooder @Julia_Cleverdon @ClairFerg @weaverworks

[Rhoda Walker @rhodajwalker]

#RankConf23 A-MA-ZING!
Agency, hope, R&D: rip-off & duplicate! No silver bullet but always a golden thread! Fab to catch up with everyone and hear ALL the stories of success and welcome in the new brand!
#thepowerofthecollective #timetoshine #starthere
Congrats @RankFoundation

[Rhoda Walker @rhodajwalker]

@M4RareDiseases
#daretothinkrare #1in17 @jeandaly55 @DrAnandSaggar @lcraig_linda

[Rhoda Walker @rhodajwalker]

How do we raise awareness amongst future medical professionals? We ask them to take part in the Student Voice Prize completion. Amazing prizes for the winners/runners up but ultimately the rare community wins! @NI_RDP @sujas15 @sduguez_lab @a_j_mcknight @shanemuk @LouiseDubras

[The Student Voice Prize @RDStudentVoice]

Being a part of the patient pairing scheme gives you the unique opportunity to speak with a rare disease patient group one-on-one! Looking for another reason to take part 👀 3 out of 4 of last year's winners were paired with a patient!

Find our more via link in bio #SVP2023

[National Lottery Good Causes @LottoGoodCauses]

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. @maemurrayfdn supported by @_SportNI. [9/18]

[Eddie Izzard @eddieizzard]

Let's just eat the cake mix as it is.
#EddieIzzardRemixTour starts TOMORROW!!! Are you coming? Tickets at https://t.co/vMgf9aRLSZ - The Beekeepers

[C Fordyce @c_fordyce]

Exciting times ahead as I start out as Senior Manager for involvement and comm dev and great to be part of #BeingBelfast.

[Rhoda Walker @rhodajwalker]

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
@GeneticAll_UK
@camraredisease

[Jeannie Di Bon @jdibon]

Patient advocacy can be hard with an invisible chronic illness that’s also fatiguing & causes brainfog. @MaggieBuckley1 winner of the The Nancy Rogowski Advocate of the Year Award @TheEDSociety this year shared her advice. Full interview in thread.

[Dermot Devlin he/him @castleDD]

£14,000 to install centenary stone at Stormont.

£150,000 to install welcome signs in Enniskillen and Omagh.

Maybe spend our money on things we actually need and want?

[MedicsforRareDisease @MedicsForRare]

NOW OPEN! Applications are live for the patient group pairing scheme. Apply now! 😀🦓

[Jeannie Di Bon @jdibon]

This is just incredible - less pain, less medication. Replaced with a daily 20 minute class with me online in The Zebra Club. This is an inspiring story. Thanks so much for sharing 🙏🏻. #hypermobility

[MedicsforRareDisease @MedicsForRare]

There are 6 lessons now available to complete of the Mental Health and Rare Disease course! 💜💡

To complete, go to https://t.co/fy6JlKBbbX! 🦓
Made in collaboration with @RaremindsUK
https://t.co/fy6JlKBbbX

[Jeannie Di Bon @jdibon]

Quick research update on our project into the integral movement method for hypermobility. Our published abstract is already available & we are so close to finalising all the data. Fingers crossed for 2024 publication of all the results. #hypermobility

[Rhoda Walker @rhodajwalker]

@jdibon @PhysiosForME @speccymcspec

[Jeannie Di Bon @jdibon]

New book photo shoot today for The Integral Movement Method for Hypermobility. Coming in 2024 - a guide for helping Hypermobile patients move safely.

[Rhoda Walker @rhodajwalker]

@NI_RDP @ehlersdanlosuk Recently @BluesteinLinda talked about hope and I thought how big a part hope plays in resilience. Then met @jdibon and discussed how resilience is supported in many different forms. We so grateful to @CortDoesScience for pursuing the science... meantime we'll keeping hoping.

[PRSPR_Antrim @PRSPR_Antrim]

Happy Monday!!

It’s not always easy to see the positive in each day but science tells us we can train our minds to be happier.

Check out this happiful link to help:-

https://t.co/w0YxSFqlC4

I hope you and your organisation have a great week 🥳