FDSSUK BREAKING NEWS
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Medical Advisory Board
The Medical Advisory Board (MAB) and Scientific Advisory Board (SAB)
There has been important planning work being carried out to deliver a medical and scientific advisory board. We are in the latter stages of forming the Medical Advisory Board (MAB) and we hope from that to evolve a Scientific Advisory Board (SAB) as we progress the charity to become more involved into the areas of research.
Once fully established and in place the Medical and Scientific Advisory Board will provide invaluable support and guidance in the key medical areas the FDSS is involved with. The role of the MAB is to provide insight, scientific direction, and expertise to the trustees, patients and members of our group. We have undertaken an extensive review and consultation process to identify the best placed medical professionals in their field who can help us moving forward. The role of the SAB will be more concerned with research projects and issues we hope to become involved with in the future.
We have included all areas of involvement of our complicated medical conditions and also doctors with an emotional understanding and empathy with us. As they become fully established details how to request advice and information will be made available here to enable members to request assistance specific to their often unique needs.
The draft MAB Terms of Reference (v4) are provided here to enable you to understand the aims of the MAB and also the members and way of working. Once finalised the ToR’s will be available here also.
The Medical Advisory Board - Why do we really need one ?
Fibrous Dysplasia/ McCune Albright Syndrome is a rare disease that affects children from birth or can only start causing problems in later adulthood. This is a very variable disease that can affect the bones, skin, hormones and potentially other part of the body, often needing care from different types of doctors, nurses, dentists and other specialities. As there are no 100% proven treatments for this condition, much of the care is based on experience and the experience of others. The combination of how rare it is, how variably it can affect people and need for experience to guide care means this is a really difficult to expect most or even some doctors to really understand the key parts for helping people with FD/MAS and their families live their lives to the fullest.
This leads to many people with FD/MAS having un-necessary delays in their diagnosis, tests and treatments. To address this, we are setting up a Medical Advisory Board of doctors, nurses, therapists and other specialists to help the FDSS guide people to the right care at the right time with the right NHS team if they have problems. Just contact the FDSS on their website and we will get back to you, not urgently but within 7 working days. If you know of a good doctor, nurse or therapist, do let us know by emailing
the FDSS.