raising_rareness (Lyndsey Walsh)
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raising-rareness.bsky.social
raising_rareness (Lyndsey Walsh)
@raising-rareness.bsky.social
160 followers 370 following 64 posts
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
🇮🇪
Posts Replies Media Videos
raising-rareness.bsky.social
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
raising-rareness.bsky.social
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.
April 12, 2025 at 6:16 AM
raising-rareness.bsky.social
I attended the RDCTN Rare Disease Research Conference 2025 & the stand out theme for me was the need for collaboration. The need for healthcare professionals, patients, families, advocates, researchers, industry & government to work together to create research around the needs of the person.
April 12, 2025 at 6:16 AM
raising-rareness.bsky.social
Happy St. Patrick’s Day 💚🌈☘️

Me and my daughter created this message this morning on her AAC communication device. It’s important to hear all voices in amongst the craic agus ceol 😁

Symbols courtesy of PCS from Tobii Dynavox® for TD Snap
March 17, 2025 at 2:03 PM
raising-rareness.bsky.social
On International Women’s Day, let’s celebrate women & girls across the globe. Let’s believe in them & give them the same chance to realise their potential. 

The UN Theme is “For ALL Women and Girls: Rights. Equality. Empowerment”
A vibrant digital illustration celebrates International Women’s Day, dated March 8th, 2025. The background is purple with the phrase “Happy International Women’s Day” in bold black and pastel pink-blue gradient text at the center. Below, the words “Rights. Equality. Empowerment.” are written in strong black lettering. The illustration features diverse women and girls who are AAC users engaged in STEM activities, education, and teamwork. Some are working with books, technology, and puzzles, while others are collaborating or teaching. The image highlights inclusivity with women of different ethnicities and abilities, including a female wheelchair user. Surrounding the text and illustrations are decorative golden-orange leaves. The Instagram handle “@raising_rareness” appears in the top left corner. Another digital illustration celebrating International Women’s Day with the same purple background and central text: “Happy International Women’s Day,” followed by “March 8th, 2025” and the phrase “Rights. Equality. Empowerment.” in bold black font. Instead of various illustrations of women, the lower half of the image features a diverse array of raised hands, symbolizing unity and empowerment. The hands vary in skin tones, accessories, and clothing, reinforcing the theme of inclusivity. The Instagram handle “@raising_rareness” appears in the top left corner. Two young girls with light skin, both wearing pink puffer jackets, walk into a building with a row of colorful arcade claw machines visible through the glass doors. The older girl, on the left, has long blonde hair with a lavender bow and is wearing black leggings with a Nirvana smiley face print. The younger girl, on the right, has brown hair tied back with a small white hair clip and is wearing pink trainers. Overlay text in bold pink and purple reads “International Women’s Day - 8th March -” with the Instagram handle @raising_rareness displayed in a small blue bubble at the bottom right corner.
March 8, 2025 at 8:04 AM
raising-rareness.bsky.social
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
March 1, 2025 at 7:29 AM
raising-rareness.bsky.social
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
raising-rareness.bsky.social
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
raising-rareness.bsky.social
Really enjoyed the inaugural Rare Disease Day event at @UHW_Waterford The first hospital in Ireland to hold such an event to mark such an important day 🙌🦓🎉

It was a truly inspiring event that sparked many conversations on the potential going forward.

#RareDiseaseDay2025
Three people standing together in front of the “Meet the 1 in 17” banner. This photo includes the woman in the floral dress with the medal, the woman in the grey blazer, and the man in the plaid shirt with the green lanyard. They are smiling at the camera with their arms around each other. The table with food is visible to the left. Three women standing together indoors in front of a green banner that reads “Meet the 1 in 17.” They are smiling at the camera. One woman is wearing a black floral dress and a medal around her neck. The woman in the middle is wearing a grey blazer with a red badge, and the woman on the right is wearing a cream sweater and a long purple skirt. There is a table with food to the side and a large artwork on the wall behind them showing children standing against a textured wall. Four people posing together in front of the “Meet the 1 in 17” banner. The group includes the woman in the red jacket, the woman in the floral dress with the medal, the woman in the grey blazer, and the man in the plaid shirt with a green lanyard. They are all smiling and standing close together. A group of five people posing in front of the same “Meet the 1 in 17” banner. They are all smiling. The group includes two women in red and navy dresses, the woman with the floral dress and medal, the woman with the grey blazer, and a man in a plaid shirt and green lanyard. The table with food is visible on the left side of the image, and the large artwork of children is on the right side.
March 1, 2025 at 7:29 AM
raising-rareness.bsky.social
Leave no one behind 👩🏼‍🦰👶🏼👦🏽👱🏻‍♂️👴🏽

What do you do when there is no care pathway?
What do you do when you might be only 2 or 3 in your country or the even only one with your rare condition?
What do you do when you have no care coordination?
What do you when you have no ‘Centre of Excellence’?
“An image for Rare Disease Day 2025, which is observed on February 28. The background features a colorful abstract design in shades of blue, purple, and pink. Bold text in the center reads ‘Leave no One Behind’ in a playful, handwritten-style font. In the top left corner, there is a pink banner with the hashtag ‘#RareDiseaseDay.’ The top right corner features the Rare Disease Day logo, which is a multi-colored hand with an eye in the center. At the bottom, four diverse individuals, including children and adults, are depicted engaging in activities like painting their hands and faces, symbolizing inclusivity and awareness.”
February 21, 2025 at 9:00 AM
raising-rareness.bsky.social
🎨 Schools:
✨ Organize a “Wear Rare” day to spark conversations and showcase your bright colours.
✨ Get creative with a rare art project, storytelling, or activity that promotes awareness.
✨Encourage students to take part in a quiz
February 18, 2025 at 8:48 AM
raising-rareness.bsky.social
🌍💜 Raise Awareness for Rare Disease Day 2025! 💜🌍

February 28, 2025, is an opportunity to shine a light on the 300 million people living with a rare condition worldwide! Whether you’re at school or in the workplace, here are a few ideas:
February 18, 2025 at 8:48 AM
raising-rareness.bsky.social
I ❤️ Someone Rare

💡Did you know that rare conditions are not really rare… 1 in 17 people in Ireland are living with a rare condition.

#RareDiseaseDay2025 #IndividuallyRareCollectivelyCommon #RareCommunity
“Colorful awareness poster for Rare Disease Day, dated February 28, 2025. The poster features the phrase ‘I Love Someone Rare’ in large, bold, pink and purple text, followed by ‘More Than You Can Imagine’ in white. The background has a watercolor-like blend of blue, purple, and pink. In the top left corner, there is a pink banner with ‘#RARE DISEASE DAY’ written in white. In the top right, there is the Rare Disease Day logo, a multicolored handprint with an eye in the center. Below the text, there are four individuals of diverse backgrounds, including a young girl with braids, a smiling person with short hair and painted hands, a young man in a white t-shirt, and a child and woman engaged in a playful face-painting activity.”
February 16, 2025 at 7:59 AM
raising-rareness.bsky.social
❤️ Happy Valentine’s Day! ❤️

Today, let’s celebrate AAC (Augmentative & Alternative Communication) - all forms of communication that a person may use without speaking mouth words. And these are just a few examples…
February 14, 2025 at 6:18 AM
raising-rareness.bsky.social
🎗️February is a huge month in raising awareness for rare conditions. It culminates in Rare Disease Day on the 28th February.

💡Did you know there are over 300 million people worldwide living with a rare condition…
Girl with blonde hair and a pink sweater using an AAC communication device by pressing a button for speech. On a pink background ‘Rare Disease Day’ in white font. White font text ‘Feb 28 2025’. It also features the Rare Disease Day Logo with colourful open hands. It includes the slogan ‘More than you can imagine’ On a pink background ‘Rare Disease Day’ in white font. White font text ‘Feb 28 2025’. It also features the Rare Disease Day Logo with colourful open hands. It includes the slogan ‘More than you can imagine’. Group of people underneath the slogan. White font text ‘Feb 28 2025’. It also features the Rare Disease Day Logo with colourful open hands. In white font ‘300 million people worldwide living with a rare disease’.
February 3, 2025 at 9:25 AM
raising-rareness.bsky.social
If you would like to personalise your Christmas Cards then
my TD snap AAC Christmas greeting can be downloaded from #PagesetCentral www.mytobiidynavox.com/pagesetcentral

#AAC #NonSpeaking #PersonaliseWithAAC
Page from TD Snap from Tobii Dynavox which includes buttons with the Christmas greeting ‘I hope you have a very Merry Christmas and Happy New Year’. The buttons have symbols and text.
December 17, 2024 at 2:18 PM
raising-rareness.bsky.social
There are many children & adults living with a rare condition who are non-speaking or have communication differences. This ‘Communication Bill of Rights’ is spot on 🙌

www.apraxia-kids.org/wp-content/u...

#CommunicationIsAHumanRight #AAC #RareCommunity
Pale yellow background featuring a diverse range of AAC users. Text ‘Communication Bill of Rights’ images by ‘drawn to AAC’ ‘I have the right…’ ‘to make my own friends and build social relationships’ ‘to say how I feel and what I like’ ‘to say no, refuse, or protest what you offer me’ ‘to comment and express my opinions’ ‘to ask for what I want, who l want, where I want to go, and what I want to do’ ‘to be an active member of my community’ ‘to give and be told info that matters to me such as changes in my day’ ‘to access communication tools and strategies’ ‘to be informed about people who work with me’ ‘to be acknowledged and responded to’ ‘to always have access to working AAC/AT’ ‘to make choices from meaningful options’ ‘to be treated with dignity and respect’ ‘to be talked to, not about’ ‘to be talked to in a way I can understand’
November 20, 2024 at 6:41 PM
raising-rareness.bsky.social
AAC Awareness month may well & truly be over but the raising awareness continues....
🪧🎗️

I set up this page to raise awareness of rare conditions, the unmet needs of the rare community & to promote awareness of Augmentative & Alternative Communication (AAC).
November 19, 2024 at 2:52 PM