camrare.bsky.social
Making rare disease an everyday conversation.
CamRARE is a charity empowering rare disease communities & fostering cross-sector collaboration to improve outcomes for those affected.
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Bethan suggests:
Schools must have a Young Carers Champion and have teachers who are aware. This is useful because sometimes young carers will be late to school, late with homework or distracted, because of their caring role.
Bethan asks: "What can you do to make a young carer feel valued today?
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Bethan writes this is what you can do to help them:
Nurses and family workers remember that we are there, and we are struggling too.
Young carers need a break. Give us time to deflate. Give us some of your time to check-in. Give us validation for what we do.
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Bethan is a sibling carer to someone with a rare disease & a CamRARE community member.
She's used her experiences to be a Young Carers Advisory Board member with Centre 33 & leads the Young Carers group at school. Young carers need a break, time to deflate, your time to check-in.
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Awesome!! 🙌🏼 thanks so much for your support in sharing 😊
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Rare Disease Day official is the 28 Feb, but this article is a great way to set the scene for the start of Rare Disease Month 😊🦓
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Hello 👋🏼 If you put hashtags in your profile description, people click on them and filter just this posts with that hashtag. Cool huh?
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Hello 👋🏼🦓