This is my friend Reggie Bibbs. Reggie is the kindest and most loving person I have ever met. His face is disfigured from a rare genetic condition called ‘Neurofibromatosis.’ After many years of never leaving his bedroom, out of shame and embarrassment, Reggie finally summoned

NF Young Adults International Summit 2023 Webinar will be to empower and motivate young adults with NF2 A panel of young adults tell stories of advocating and not letting NF2 overpower their life Register here: bit.ly/NFYAintlSummit @nf2biosolutionsuk @an_nf2_point_of_view

We are proud to support the #GetRareAware campaign. Waiting 2 years + for routine genetic apps & knowing genetic test results have come back with a genetic condition is detrimental to the well-being & care of #PLWRD & their families. #EndTheWait #TimeForAction

Thank you so much to Health Research Charities Ireland - HRCI for giving us the opportunity to speak at #RDF2023 this evening - it was a fantastic event! If you are interested in helping us embed the patient voice at the heart of #RareDisease clinical trials please get in touch!

Register today to secure your place!

Raising Awareness is very important to keep the world talking about NF2. Tell your story! Raising awareness in Oscars school newsletter about his recent walk Thankyou Bramcote College for helping raise awareness #strongertogether #endNF2 #NF2awareness #neurofibromatosis type2

Very disappointed ASK Ryanair Ryanair you’ve lost the footrest part of our Maclaren Elite pram that our daughter with additional needs requires for her safety & travel. Need this back asap please. Tricky enough travelling at the best of times but expected more booking assistance

NF Ireland is currently working with management in CHI and the HSE to improve the waiting list, staffing resources and medical intervention for people living with NF in Ireland To help with our campaign please sign our petition and pass on RARE Ireland chng.it/LD6NhjJVct

Our Youth Ambassador, Olivia, has been working hard with other NF Young Adults to produce a summit for young people An afternoon of fun and learning about NF And it's FREE! Empower Inspire Motivate To register click here bit.ly/NFYAintlSummit #ItsGoodToTalk

I finished radiation treatment today!! After 5 and a half long weeks, I am so glad to say I am finally done! 👏🥳 so grateful to my fantastic oncology team for taking such good care of me! #radiation #braintumour #neurofibromatosistype2 #raisingawareness instagram.com/p/CvZ7OByNftz/

For so long we wanted an AAC system that was going to enable Arabella to communicate her needs, requests, wants etc. To us as her family this was paramount, as was her being able to access a system that could enable her to tell us if she is hurt, sick, her feelings etc.

We have been busy bees and delighted to also announce that we have become members of the Neurological Alliance. The Neurological Alliance, England’s leading coalition of organisations and professional bodies supporting people with neurological conditions #endNF2 #NF2awareness

Every single person that talks about NF2 helps to raise awareness. Your story raises awareness & helps others on their journey too. If we don't talk about NF2 and raise awareness no-one will listen to us, nothing will change. Share your story email [email protected]

Just over a month to go. Tickets still available on eventbrite. Great line up of speakers including rare disease patients, carers, advocates and researchers eventbrite.com/e/rare-ireland…

So very true! Another great read. psychologytoday.com/us/blog/life-w…

This is difficult to process. All staff at the school signed the complaint, serious complaints! Autistic children, those with ID, in fact any child should not be exposed to this treatment. Principal suspended amid allegations of abuse via RTÉ News rte.ie/news/2023/0906…

1) As per RTÉ News, Tusla is investigating allegations of abuse of children by a school principal following concerns by raised by staff. Yet parents advise when they raise similar concerns about abuse, Tusla have told them they have no remit in allegations against teachers.

Our conference and information day lineup. This year we have added a breakout session to allow families, researchers and support organisations to interact and chat about how we can all work together to promote change and awareness for #PLWRD

Thank you for following 🙏 800+ Raising awareness of rare conditions is very close to my heart. That naturally became an advocacy mission also. You learn pretty quickly that you have to take on that mantle for your own family but I truly believe in community #LeaveNoOneBehind

March is Brain Tumour Awareness Month We are sharing slides from our friends at @An_NF2_point_of_view who raise awareness about NF2. Brain tumours are very common in NF2. Most people with NF2 will be diagnosed with a brain tumour at some point. Support brain tumour research #endNF2