Alpha1 Awareness UK

Welcome....

....to the website for all sufferers of Alpha-1 Antitrypsin Deficiency. We hope you will find this site helpful. You will find information about the condition, contacts who are ready to give you more information, social and fundraising events and how to become a member of this patient support group.

PLEASE NOTE that this website is run by Alphas and their carers. We do our best to make the information up-to-date and accurate. HOWEVER ALWAYS consult your GP or other medical professionals.

Members are invited to join the forum where they read about current topics affecting Alphas and Alpha children, where they can receive advice and support and make their own views known. Go to the Forum page.

European Alpha1 Congress LONDON 2010

The Fifth European Congress of the Alfa Europe Federation will be held in London on the 9th and 10th of July 2010. Alpha1 Awareness UK is the host association and the event is sponsored and organised by Alpha Europe Foundation

The congress will be held at the Hilton, Kensington. All members of Alpha1 Awarenss UK are invited to attend along with their carers and close family.

On Friday the 9th a dinner will be held for all international attendees and Alpha1 Awareness members. Accomodation will be provided as well as lunch on Saturday the 10th. The topics of the presentations on Saturday will be: Research, Alpha Children, Rare Diseases, Augmentation Therapy, and more. The event will finish at approximately 3:30 pm.

Oxygen will be available for those members who need it.

Booking details will be made available in the new year.

Rare Disease Day

Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level. Rare Disease Day is observed on the last day of February. Within the United Kingdom the events are being co-ordinated by the Genetic Interest Group and Rare Disease UK.

The membership secretary of the charity Alpha1 Awareness UK has written to all our members in Scotland, Wales and Northern Ireland urging them to attend the Rare Disease events at their Parliaments or Assemblies as well as contacting their MSPs, AMs and MPs. She herself will attend the Welsh Assembly to support Rare Disease UK and to lobby, in both English and Welsh, for better treatment of patients with Alpha1 Antitrypsin Deficiency.

Go to http://www.rarediseaseday.org/ to read more.

Research

We have now expanded our support for research into the causes and cures for diseases arising from the condition Alpha1 Antitrypsin Deficiency. See the Research page.