We invite you to join our private Facebook group, HAE UK Association, where you can make contact with and gain support from other HAE patients in the UK.
You must request to join this group which is strictly for UK patients and their families only.
The views on this group are personal, not professional – you must discuss any important issues with your Immunologist, consultant or other medical professional.
Please familiarise yourself with the following group guidelines:
HAE UK is an Association of HAE Patients working together to help support and improve the situation for all HAE patients in the UK – www.haeuk.org
If you request to become a member of our closed group, we will send you a personal message, so please check your ‘other’ mailbox.
The HAE UK Association Facebook group is a closed group for HAE patients to give and receive support on all areas of their life that are directly related to their HAE experience. We know that people with such a rare condition find it incredibly helpful to talk to others who understand what we are trying to cope with. To maintain a really supportive group we need to have clear guidelines for all our postings which all members must adhere to. Members not following these guidelines may be removed.
• Members should be able to share their experiences and concerns, and offer personal support to each other, but members must NEVER offer medical advice. If you have any concerns it is important you seek advice from your HAE Specialist or e-mail: email@example.com
• It is important not to personally name consultants, nurses, care teams in posts if you are unhappy with care you are currently receiving. Please e-mail HAE UK who can support you with any problems you may be having.
• Administrators must be able to view all posts – any member found to be blocking the administrators will be removed from the group.
• This is a HAE Group. Please stay on topic and avoid mutating to something different than was originally intended.
• You must not post links to surveys, unrelated articles or personal businesses. Any such posts will be removed immediately.
• Always treat all other members with respect – we are all different and need to allow others to express their own individual opinions. Personal or discriminatory attacks or bad language are not acceptable.
• The group administrators (Rachel and Furkhanda) are authorised to remove any inappropriate postings in the interests of the group as a whole.
• The majority of group members have HAE type I or II. If you are posting about HAE type III or AAE (Acquired Angioedema) please state this clearly in the post and any comments you make, to ensure this does not lead to confusion for other members. Failure to do this may mean posts have to be removed.
• Clear information about HAE management can be found on this website and in the 2014 Consensus Document and the 2013 NHS England Clinical Commissioning Policy for the Treatment of Acute Attacks of HAE. Please feel free to contact Laura Szutowicz, HAE UK CEO, if you would like to discuss any aspect of your HAE management on a confidential one-to-one basis: firstname.lastname@example.org
If you have any concerns about this group, members of this group or any postings or comments, please contact us: email@example.com