Knowledge is power! This #jeansforgenes week we heard from Victoria and Jason about what they learned going through their son's genetic diagnosis. Whilst the medical professionals and researchers have the incredible medical knowledge it is you (and your family/carers) that knows the most about your own journey and you should feel confident to ask the right questions and seek the right professionals for your needs.#TeamDenim #makeadifference ... See MoreSee Less
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This #JeansForGenes week we wanted to share some practical advice from people in our #pten #RareDisease community about dealing and living with a #genetic diagnosis. You can hear from Mark here: #TeamDenim #makeadifference ... See MoreSee Less
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We are delighted with the feedback we have been getting from people already signed up for our RareMinds counseling service. Don't forget to check it out: buff.ly/3rEZ3DO ... See MoreSee Less
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