raising_rareness (Lyndsey Walsh)
@raising-rareness.bsky.social
Raising awareness of rare diseases & conditions
#2q24.2 Advocating for my daughter & Rare Community 💗
Mum of 3
#AAC #AugmentativeAndAlternativeCommunication
MA Archaeology UCC
Opinions my own
🇮🇪
#2q24.2 Advocating for my daughter & Rare Community 💗
Mum of 3
#AAC #AugmentativeAndAlternativeCommunication
MA Archaeology UCC
Opinions my own
🇮🇪
It’s always a pleasure to meet with other members of the #RareCommunity As well as advocates, researchers, friends & allies of a community that is #StrongerTogether
@22qirl.bsky.social @rarediseasectn.bsky.social @cassandradinius.bsky.social
@22qirl.bsky.social @rarediseasectn.bsky.social @cassandradinius.bsky.social
April 12, 2025 at 6:16 AM
It’s always a pleasure to meet with other members of the #RareCommunity As well as advocates, researchers, friends & allies of a community that is #StrongerTogether
@22qirl.bsky.social @rarediseasectn.bsky.social @cassandradinius.bsky.social
@22qirl.bsky.social @rarediseasectn.bsky.social @cassandradinius.bsky.social
Of course I will always advocate for more research, because research provides us with a powerful tool to advocate for better supports, treatments & care for #PLWRD & their families. We need the evidence…..
April 12, 2025 at 6:16 AM
Of course I will always advocate for more research, because research provides us with a powerful tool to advocate for better supports, treatments & care for #PLWRD & their families. We need the evidence…..
It was fantastic to see some of the amazing research that is being conducted showcased in a poster display at the conference.
April 12, 2025 at 6:16 AM
It was fantastic to see some of the amazing research that is being conducted showcased in a poster display at the conference.
Really enjoyed Mary Desmond Vasseghi presentation on PPI involvement from a family perspective. It resonated….
Encouraging to hear the perspectives of both families & health care professionals on PPI. The outcomes will always be better if real meaningful PPI can be established & built upon.
Encouraging to hear the perspectives of both families & health care professionals on PPI. The outcomes will always be better if real meaningful PPI can be established & built upon.
April 12, 2025 at 6:16 AM
Really enjoyed Mary Desmond Vasseghi presentation on PPI involvement from a family perspective. It resonated….
Encouraging to hear the perspectives of both families & health care professionals on PPI. The outcomes will always be better if real meaningful PPI can be established & built upon.
Encouraging to hear the perspectives of both families & health care professionals on PPI. The outcomes will always be better if real meaningful PPI can be established & built upon.
Of course this doesn’t happen overnight & it requires a great deal of trust, openness, transparency, clear communication & always listening to the voice of the centre of #RareResearch There are significant barriers & constraints but we have to work together to remove these.
April 12, 2025 at 6:16 AM
Of course this doesn’t happen overnight & it requires a great deal of trust, openness, transparency, clear communication & always listening to the voice of the centre of #RareResearch There are significant barriers & constraints but we have to work together to remove these.
This IWD , we honour all women & girls navigating life with a rare condition, disability, & caregiving roles. Let’s continue to amplify their voices, advocate for their rights, & build a future where no one is left behind.
#InternationalWomensDay2025 #RaisingRareness #Equality4All
#InternationalWomensDay2025 #RaisingRareness #Equality4All
March 8, 2025 at 8:04 AM
This IWD , we honour all women & girls navigating life with a rare condition, disability, & caregiving roles. Let’s continue to amplify their voices, advocate for their rights, & build a future where no one is left behind.
#InternationalWomensDay2025 #RaisingRareness #Equality4All
#InternationalWomensDay2025 #RaisingRareness #Equality4All
Non-speaking autistic females are also at increased risk of abuse, particularly when they are unable to report this. It reinforces the urgent need to prioritise their right to communication, advocacy, & autonomy.
March 8, 2025 at 8:04 AM
Non-speaking autistic females are also at increased risk of abuse, particularly when they are unable to report this. It reinforces the urgent need to prioritise their right to communication, advocacy, & autonomy.
Every girl should have the right to express herself, make choices, & be involved in decisions about her life. The lack of accessible AAC systems often robs non-speaking autistic females of this fundamental right, leaving them unheard in conversations about their own care, education, & future.
March 8, 2025 at 8:04 AM
Every girl should have the right to express herself, make choices, & be involved in decisions about her life. The lack of accessible AAC systems often robs non-speaking autistic females of this fundamental right, leaving them unheard in conversations about their own care, education, & future.
Non-speaking does not mean non-thinking. Many non-speaking autistic females have so much to share but without adequate access to communication tools eg. robust AAC systems, they can be restricted in doing so.
March 8, 2025 at 8:04 AM
Non-speaking does not mean non-thinking. Many non-speaking autistic females have so much to share but without adequate access to communication tools eg. robust AAC systems, they can be restricted in doing so.
Non-speaking autistic females live at the intersection of ableism & gender bias, where their voices are often unheard.
March 8, 2025 at 8:04 AM
Non-speaking autistic females live at the intersection of ableism & gender bias, where their voices are often unheard.
Empowerment means recognising their voices, spoken or non speaking.
It means championing the rights of all women & girls, especially those whose stories are too often left out of conversations about equality.
It means championing the rights of all women & girls, especially those whose stories are too often left out of conversations about equality.
March 8, 2025 at 8:04 AM
Empowerment means recognising their voices, spoken or non speaking.
It means championing the rights of all women & girls, especially those whose stories are too often left out of conversations about equality.
It means championing the rights of all women & girls, especially those whose stories are too often left out of conversations about equality.
They asked lots of questions & little sister explained ‘That’s her voice, she uses that to communicate’. They thought it was the coolest thing 😎
March 8, 2025 at 8:04 AM
They asked lots of questions & little sister explained ‘That’s her voice, she uses that to communicate’. They thought it was the coolest thing 😎
I remember a time when big sister went into her preschool last year & little sister proudly said ‘This is my sister’. Big sister began using her AAC communication device & all the little children were amazed.
March 8, 2025 at 8:04 AM
I remember a time when big sister went into her preschool last year & little sister proudly said ‘This is my sister’. Big sister began using her AAC communication device & all the little children were amazed.
The UN theme resonates as we have 2 young daughters — one is non-speaking & living with a rare condition, & the other is a young carer, growing up curious, compassionate, kind, and is learning to be accepting of difference. Different not less.
March 8, 2025 at 8:04 AM
The UN theme resonates as we have 2 young daughters — one is non-speaking & living with a rare condition, & the other is a young carer, growing up curious, compassionate, kind, and is learning to be accepting of difference. Different not less.
Lovely to meet so many families, advocates, healthcare professionals, researchers, & students 🙏
Kudos to Anne Lawlor and Angela Carey for bringing this event to Waterford
#IndividuallyRareCollectivelyCommon #1in17
@hselive.bsky.social
Kudos to Anne Lawlor and Angela Carey for bringing this event to Waterford
#IndividuallyRareCollectivelyCommon #1in17
@hselive.bsky.social
March 1, 2025 at 7:29 AM
Lovely to meet so many families, advocates, healthcare professionals, researchers, & students 🙏
Kudos to Anne Lawlor and Angela Carey for bringing this event to Waterford
#IndividuallyRareCollectivelyCommon #1in17
@hselive.bsky.social
Kudos to Anne Lawlor and Angela Carey for bringing this event to Waterford
#IndividuallyRareCollectivelyCommon #1in17
@hselive.bsky.social
Care Coordination really supports people living with a rare condition and their families. We have a template, so let’s #LeaveNoOneBehind
March 1, 2025 at 7:29 AM
Care Coordination really supports people living with a rare condition and their families. We have a template, so let’s #LeaveNoOneBehind
Really enjoyed Aine’s presentation on what it was like for her growing up, finding her confidence, and how acceptance is so important to her.
She proudly showed me her recent gold medal for bowling 🎳🎉 #KeepShining
She proudly showed me her recent gold medal for bowling 🎳🎉 #KeepShining
March 1, 2025 at 7:29 AM
Really enjoyed Aine’s presentation on what it was like for her growing up, finding her confidence, and how acceptance is so important to her.
She proudly showed me her recent gold medal for bowling 🎳🎉 #KeepShining
She proudly showed me her recent gold medal for bowling 🎳🎉 #KeepShining
It highlighted the multi system nature of 22q11, the needs in the health system, the community, and educational needs, the need for continuation of care into adult services, the importance of what this means to the families & the evidence of what is working well 🙌 #Meaningful
March 1, 2025 at 7:29 AM
It highlighted the multi system nature of 22q11, the needs in the health system, the community, and educational needs, the need for continuation of care into adult services, the importance of what this means to the families & the evidence of what is working well 🙌 #Meaningful
So interesting to hear from a person living with a rare condition, a carer, and a care coordinator. It focused on the workings of the 22q11 paediatric clinic and how this is also a #TransferableModelOfCare #HearDifferentPerspectives
March 1, 2025 at 7:29 AM
So interesting to hear from a person living with a rare condition, a carer, and a care coordinator. It focused on the workings of the 22q11 paediatric clinic and how this is also a #TransferableModelOfCare #HearDifferentPerspectives
But by integrating ultra-rare diseases into care pathway development, we create a more inclusive, equitable, and compassionate healthcare system. Just because a condition is not ‘prevalent’ it doesn’t necessarily mean that the needs are not similar.
February 21, 2025 at 9:00 AM
But by integrating ultra-rare diseases into care pathway development, we create a more inclusive, equitable, and compassionate healthcare system. Just because a condition is not ‘prevalent’ it doesn’t necessarily mean that the needs are not similar.