Resources for the Newly Diagnosed
As a parent receiving a diagnosis of Nicolaides-Baraitser Syndrome (NCBRS) for your child it can be quite overwhelming and you may not know where to start. We are here to support you and let you know that you are not alone on this journey.
What is NCBRS? Whilst this is an overview of NCBRS it is important to remember, that all people diagnosed with NCBRS are individuals, not everyone diagnosed with NCBRS will have all the symptoms listed. Our stories includes lots of photos and details describing families personal journeys, we encourage you to read these inspirational stories. As NCBRS is such a rare syndrome it is unlikely that your doctor will have met someone with the syndrome previously. We encourage you to educate yourself as much as possible about NCBRS, this will make it so much easier to become an effective advocate for your child. The following is a great publication which will give you a better understanding of NCBRS. Genetics home reference report on NCBRS. We strongly recommend that all families join our private Facebook support group which is a wonderful supportive nonjudgmental environment. It will give you the opportunity to connect with other parents, who understand the challenges, emotions and practicalities that we face everyday. Please contact us on [email protected] to make yourself known to us and we will add you to the group. Please follow this link to our Spanish Parent's Website. |
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A Conversation Between NCBRS & RDI
Our Co-Founder Lee Reavey and Board Member Nuala Ryan had a conversation with Rare Diseases International to talk about the importance of family support groups, education, research and international collaborations. |