How You Can Help Us
As professionals, there are many ways in which you could help us. Here are just a few.
- Tell your families about us.
We find many families are not being told about us, or about any other sources of support, and so they are left feeling isolated and struggling. Please do direct them to our website or give them one of our introductory leaflets. If you need a supply of these leaflets, please contact Marion Mitchell (Marion@rarechromo.org), our Family Support Officer, and she will send you some.
- Arm your families with their child's full karyotype and/or molecular analysis results
When you tell families about us, please let them have their child's full karyotype with any breakpoint numbers and/or the results of any molecular analysis such as FISH or microarray CGH (including base pair coordinates and human genome build number), preferably with a copy of the original lab report explaining the results. This information is essential for us to correctly document their child's disorder on our database and to provide the family with most appropriate support.
- Become a professional member of Unique
This is an excellent way to learn about day to day living with a rare chromosome disorder. Please go to our Join Us page in this section.
- Offer to verify our disorder-specific guides
We are always looking for professionals with expertise in specific rare chromosome disorders to verify our family-friendly guides If you think you could help, please contact Dr. Sarah Wynn (Sarah@rarechromo.org), our Information Officer.
- Join our extensive panel of experts
We have a large and rapidly expanding panel of experts we can consult about all aspects of rare chromosome disorders (including cytogeneticists, molecular geneticists, clinical geneticists and genetic counsellors, research geneticists, paediatricians and many other clinicians, nurses, therapists, special needs teachers and social workers). If you would like to volunteer your skills and expertise, we would be very grateful. Please contact Beverly Searle (Beverly@rarechromo.org), our CEO.
- Become a "Friend of Unique"
Many of the professionals we have worked with over the years have become real friends of Unique and have helped us in other ways - raising awareness of our work, making personal donations, directing us to sources of funding, fundraising themselves, having Unique collection pyramids in their places of work, running sponsored marathons and even holding raffles for us! If you would like to get involved in this way (and it can be fun!), we would love to hear from you. Please contact Craig Mitchell (Craig@rarechromo.org), Unique COO, to discuss your ideas.
Please help us to help you in your work with families.