Today, February 28th is Rare Diseases Day and we thought it a good opportunity to remind you that OA/TOF is one of more than 6000 rare diseases*. Whilst each of these diseases affects a relatively low number of people, in total they affect an estimated 3.5 million people in the UK, some 30 million across Europe, and over 300 million worldwide.
Most, if not all, rare diseases require specialist care.
Whilst TOFS is delighted to support and engage with UK-based research studies and very much appreciates the support of its Medical Advisory Group; we also recognise the importance of international collaboration with other OA patient groups along with expert clinicians and researchers across the world, with the aim of benefitting all OA/TOF patients not only in the UK but world-wide. We’re also proud of the international reach of TOFS itself; our current membership extends to 65 countries across the world).
TOFS was a founder member of EAT and through this international federation of OA support groups, we engage with major international research programmes and medical organisations such as ERNICA and INoEA.
Through our membership of EAT and of the UK’s umbrella organisation for Rare Diseases, Genetic Alliance , we also support the efforts of EURORDIS and Rare Diseases International in their mission to engage with clinicians, to support research, and to facilitate networking amongst patient groups.
They are key to raising awareness of rare diseases, not only amongst the general public but also, crucially, with key political decision makers and organisations such as the World Health Organisation to ensure the concerns of rare disease patients are recognised, and that rare diseases remain on the political and healthcare agendas.
Of course, the majority of TOFS’ activities remains focused on our pastoral support and the provision of information which provides immediate benefit to our members. But we want you to know that, not only are you not alone as an OA/TOF patient or a parent or carer, but that you belong to a big international rare disease ‘family’. We also trust that you understand why it is very important that we collaborate with other patient organisations, with expert clinicians and with the research programmes mentioned above, as we jointly seek to improve outcomes for all OA/TOF patients, including of course those we already support, but also for those yet to be born.
*defined as affecting less than 5 in every 10,000 people
