Atypical Hemolytic Uremic Syn. Community
Meet, discuss & support other patients or families living with Atypical Hemolytic Uremic Syn.. Contribute to topics, or just share what's on your mindaHUSUK has been very busy with its Annual General Meeting, which also included some presentations from some leading clinicians from the UK. Thirty members attended it, so we are growing!
In Europe we have all been waiting for FEDERG to develop. FEDERG is aiming to be a federation of Patients Organisations which are focussed on renal diseases which are genetic in origin, which of course includes aHUS or SHUa.
Discussions are currently taking place about how that organisation is to be designed and financed
From aHUSUK point of view we have joined, so that a European aHUS/SHUa Network can be created; as well as to be supportive of any unifying across pathology activities.
But a “European aHUS Network is seen as our priority, to spread awareness about the disease across Europe through Europe wide activities complementing national activity. Rare Connect though Eurodis provides a platform for a mix of individual and organisation involvement and information share , and long may it do so; but it is unlikely to generate a collaborative approach to action unless organisations get together.
Recently from posts about advocacy and adult inclusion it seems, the Foundation in the USA is aiming to breakdown its activities to State or Regional level.
For Europe it is the opposite that is needed!
At present we know of no other formal national aHUS/SHUa patient organisation, other that aSHUa in Spain and aHUSUK in the United Kingdom. SHUa France being part of AIRG and are not a separate entity, we believe.
So, if a network is to develop, it will be down to existing those existing contacts in Spain, France and UK to get it going.
But if there is anyone from Italy, Germany or the other 24 countries in the European Union who are not yet engaged, but who wish to form a aHUS organisation for their country and to join in the creation of a European aHUS/SHUa network, perhaps they could join in the discussion in this forum.
In Europe we have all been waiting for FEDERG to develop. FEDERG is aiming to be a federation of Patients Organisations which are focussed on renal diseases which are genetic in origin, which of course includes aHUS or SHUa.
Discussions are currently taking place about how that organisation is to be designed and financed
From aHUSUK point of view we have joined, so that a European aHUS/SHUa Network can be created; as well as to be supportive of any unifying across pathology activities.
But a “European aHUS Network is seen as our priority, to spread awareness about the disease across Europe through Europe wide activities complementing national activity. Rare Connect though Eurodis provides a platform for a mix of individual and organisation involvement and information share , and long may it do so; but it is unlikely to generate a collaborative approach to action unless organisations get together.
Recently from posts about advocacy and adult inclusion it seems, the Foundation in the USA is aiming to breakdown its activities to State or Regional level.
For Europe it is the opposite that is needed!
At present we know of no other formal national aHUS/SHUa patient organisation, other that aSHUa in Spain and aHUSUK in the United Kingdom. SHUa France being part of AIRG and are not a separate entity, we believe.
So, if a network is to develop, it will be down to existing those existing contacts in Spain, France and UK to get it going.
But if there is anyone from Italy, Germany or the other 24 countries in the European Union who are not yet engaged, but who wish to form a aHUS organisation for their country and to join in the creation of a European aHUS/SHUa network, perhaps they could join in the discussion in this forum.
