Hypermobility Syndromes Awareness Week (incorporating Rare Disease Day) takes place over the last week of February each year and was launched in 2016 with the tabling of Early Day Motion 1131 by HMSA Patron and former MP for North Norfolk, Norman Lamb. The #GetConnected branch of the 2016 campaign encouraged patients to connect with their Westminster Representatives and raise awareness of the difficulties faced by people seeking diagnosis, and the importance of early intervention in supporting self-management and preventing significant debilitation at a later date. 
Of the thirty signatories (despite two General Elections) most are still in the Commons, and one now has a seat in the Lords. If you're new to the HMSA or the hypermobility community you may want to check whether your MP is among them, and if you were around then it may be worth contacting your MP to find out how they intend to help constituents, particularly in the light of the governments response to a 2017 petition to Fund Research into EDS and the more recent attention given to the hypermobility syndromes in the Commons following the initial Healthwatch report into difficulties experienced by adults with hypermobility syndromes in the Yorkshire, Humber, and Calderdale areas (see Hansard transcript, here).
The devolved NHS of Scotland (note the lack of provision in Scotland and significant support for the EDM from SNP MPs), NI and Wales have their own 'Healthwatch equivalent' patient quality monitors, if you are having or have had difficulty getting appropriate support to manage your condition, consider raising your concerns with your local MP, Regional Parliament/Assembly members and any relevant CCG patient groups.
Each year the campaign takes a different approach to raising awareness of the issues faced by the symptomatic hypermobile community and the various conditions they have, this year our theme is #2020Hindsight - we're looking back over the previous campaigns and asking our team, members and followers, "If you'd known then what you know now, what might you have done differently?"
The journey from developing symptoms, to diagnosis, through any relevant treatment or rehabilitation is a complex one, with no 'right-first-time' guarantee because a different balance of approaches is required for each individual. This means that in addition to lengthy waits for diagnosis and support, it can take a long time, often years, to work out how to best manage the condition once an appropriate 'label' for the condition has been applied.
The HMSA, founded in 1992 is committed to sharing the experiences of our members with those more recently diagnosed so that they can access more quickly the various tips, tricks, revelations and 'lightbulb moments' our volunteers discovered on their own journeys with a view to reducing the length of time it takes an individual to learn how to manage their often variable, unpredictable and uncooperative physical condition. 
Please note: The JustText service mentioned on some older campaign material closed last year. To donate to the HMSA, please use the donate button on our website