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Research opportunities
If you’re looking to get involved in research, there are often many projects and studies taking place. Take a look at the current opportunities that we have come across.
Views on new tests and treatments for genetic conditions during pregnancy
Who can get involved?
People with, and parents/carers of children with, genetic conditions
Research in NRXN1 / 2P16.3
Who can get involved?
People with, or who have children with, a variant in NRXN1 / 2P16.3 gene
Understand the perspectives of
caregivers who use enclosed beds
Who can get involved?
Caregivers of people with intellectual disability
How does RARB-related disorder affect you over time?
Who can get involved?
People affected by RARB-related disorder (also known as MCOPS12)
Email researcher for more info
Brain and Behaviour in Neurodevelopmental Disorders of Genetic Origin (BINGO)
Who can get involved?
UK-based individuals over the age of 10 with a genetic diagnosis from the following list:
ACTB, ACTL6B, ARID1A, ARID1B, ARID2, ATRX, BICRA, DPF2, SMARCA2, SMARCA4, SMARCB1, SMARCC2, SMARCD1, SMARCE1
Feelings on future pregnancies after a de novo (new) diagnosis
Who can get involved?
Parents who have a child with a condition caused by a de novo (new) genetic change and were offered a personalised PREGCARE assessment (you may have accepted or declined the offer) or were you provided standard recurrence risk counselling and NOT offered PREGCARE?
Participants whose child was diagnosed through the National Health Service (NHS) in England and Wales would be most helpful for this study.
Contact researcher Alison Kay directly for more info: alison.kay@imm.ox.ac.uk
Helping families achieve an earlier diagnosis through facial matching
Who can get involved?
Families of children with a diagnosed intellectual
condition or syndrome
We R Rare – Join the Patient, Family and Carer Steering Group
Who can get involved?
Patients, carers and family members with direct experience of rare conditions across Manchester and North-West England.
They have a current focus on men and individuals from diverse backgrounds
Perceptions and emotions while receiving your child’s genetic diagnosis in the hospital
Who can get involved?
Parents/caregivers who are19 years or older who have a child that received a genetic diagnosis while in the NICU, PICU, or CCU.
Your child’s diagnosis cannot be Trisomy 21, Trisomy 18, Trisomy 13, or Turner syndrome as separate studies are likely more appropriate for parents of children with these conditions.
