Links

Alpha Associations

Alpha Europe Federation. The Federation campaigns for better and equal treatment of all Alphas in Europe. The members are national associations from Austria, Belgium, Denmark, France, Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Spain, Sweden and the United Kingdom.

Alpha-1 Alliance UK. The Alpha-1 Alliance brings together the key patient groups for Alpha-1 in the UK, including the Alpha-1 Awareness UK, Alpha-1 UK Support Group and Alpha-1 Advocacy & Action. The Alliance website www.alpha-1-alliance.org.uk.

Alpha-1 Global. This website provides a platform for Alphas to communicate and collaborate. It is a network for the exchange of news, information and ideas on improving Alpha-1 awareness, detection and access to care around the world.

Rare Diseases

Alpha-1 Awareness UK works closely with the following organisations who promote the interest of Alphas but with specific reference to the rarity of the condition.

Rare Diseases UK. Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.

Specialised Healthcare Alliance. SHCA is a coalition of patient-related groups and corporate members with a strong record of campaigning on behalf of people with rare and complex conditions in need of specialised care. These services cover a wide range of conditions, many of which could affect any one of us at some point in our lives.

EURORDIS Rare Diseases Europe. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing more than 510 rare diseases patient organisations in over 48 countries.

Orphanet. Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

Orphanet entries:

In each case type in the Disease name (Alpha-1 antitrypsin deficiency) and select the Country from the pull down list (UK) then press OK.  You then have the choice of Alpha-1 antitrypsin deficiency or the Pittsburgh mutation.  Select the first option.

The UK medical entries are administered by an NHS team based in Manchester.

Respiratory Groups

British Lung Foundation. “The British Lung Foundation – the UK’s lung charity” “One person in five in the UK is affected by lung disease. Millions more are at risk. We are here for every one of them, leading the fight against lung disease.”

European Lung Foundation. The European Lung Foundation (ELF) was founded by the European Respiratory Society (ERS) in 2000 with the aim of bringing together patients, the public and respiratory professionals to positively influence respiratory medicine.

European Respiratory Society. The European Respiratory Society is is the leading professional organisation for respiratory specialists in Europe. It is broad-based, with some 10,000 members and counting in over 100 countries. Its scope covers both basic science and clinical medicine. Their mission is to alleviate suffering from respiratory disease and promote lung health through research, sharing of knowledge and through medical and public education. ERS membership is made up of individuals working in the field of respiratory health: respiratory specialists, medical practitioners, scientists and researchers and allied health professionals, such as nurses, physiotherapists and technologists.

The Scottish Intercollegiate Guidelines Network.  SIGN is a publicly funded organisation that develops evidence-based clinical guidelines for health care professionals in Scotland.  Further details on SIGN can be found on the website www.sign.ac.uk.  Alpha-1 Awareness is a member of the SIGN patient network.  Please contact us if you wish to be consulted on commenting on the guidelines.

Alpha 1 – The Facts

Alpha 1 – Liver

Videos

Alpha1 Antitrypsin  – www.youtube.com/watch?v=6GHa-KRv6HA

also www.youtube.com/watch?v=SqGoZRBrlvs&feature=fvwrel&NR=1

Mystery Diagnosis (part 1)  www.youtube.com/watch?v=wYsaosI26oQ

Mystery Diagnosis (part 2)  www.youtube.com/watch?v=lCW0gutkGzs

American Sites