EDEN Study

Are you an expectant parent who has NF1? We are trying to better understand the pregnancy experiences of expectant parents with NF1. If you or your partner would like to participate, please fill out the form in the link. Your story matters to us! nervetumours.org.uk/news/eden-p-st…

Hi everyone, We're still recruiting participants for the interviews. Please get in touch with us if you meet the following criteria: - You or your partner have NF1 - You or your partner is pregnant - You are living in the UK Your story matters to us! nervetumours.org.uk/news/eden-p-st…

If you or anyone you know is affected, get in touch. We are here to help. Find out more: nervetumours.org.uk/get-involved/s… [nervetumours.org.uk]

World NF Day 17th May 2024 @NervetumoursUK Raise awareness and #ShineALightOnNF! 130 plus buildings and landmarks in the UK are lighting up in blue tomorrow. It's not too late to get involved. Light up your homes, office & gardens in blue for #WorldNFAwareness. #MakeNFVisible

#MakeNFVisible #NFSupport #MedicalSupport #callforparticipants

Call for expectant parents with NF1 in the UK! Please get in touch with us if you meet the following criteria: -You or your partner have NF1 -You or your partner is pregnant -You are living in the UK Please feel free to ask if you have any questions. #nf1 #IVF #PGT #pregnancy

📢📢 #callforparticipants Hello #edutwitter I’m looking for teachers/SENCOs to help me with research on teacher PD in supporting autistic pupils in mainstream. Survey link👇 qualtrics.manchester.ac.uk/jfe/form/SV_cL… Please share 🙌 #teacher #primaryschool #secondaryschool #nursery #SENCO

We need YOUR help on World Rare Disease Day! If you or your partner have NF1 and are currently expecting, we want to hear from you. Your insights are invaluable! 💡 Learn more and sign up today: shorturl.at/huEY8 #RareDiseaseDay 🌟

Very happy to see this. I worked with an amazing team @JosephKeenan4 with animators from @SODAmcr to bring this to life @ChildhoodTT enabled this to happen as sponsor of my PhD focussing on NF1 and breast cancer awareness. #RareDiseaseDay2024

Are you an expectant parent who has NF1? We are trying to better understand the pregnancy experiences of expectant parents with NF1. If you or your partner would like to participate, please fill out the form in the link. Your story matters to us! nervetumours.org.uk/news/eden-p-st…

Do you or your partner have NF1? Are you pregnant, or have a baby between the age of 0-14 months? Please contact us to request a study pack or learn more about the study. email: eden@manchester.ac.uk tel: 01617014531

Join We R Rare, a new Patient Public Involvement Group! MRCC & Biomedical Research Centre seek 12 individuals with rare condition experience in Manchester and the North West. Make a difference! Visit mrcc.org.uk/education-enga… to find out more

Help us make a difference by joining our research study! Please share the details with anyone who might be interested in contributing to our research.

#NF1 #Neurofibromatosis #pregnant #pregnancy