Alfa Europe

Alfa EuropeA Federation for Europe•For Health•For AlphasLarry Warren, President Alfa Europe.CEO Alpha One Foundation, Ireland

The Business Model• The Features of Alfa Europe(What it looks like)• The Functions of Alfa Europe(What it does)• The Benefits of Alfa Europe(How it helps)

What it looks like - Membership• Full Members:1. Sweden2. Denmark3. Ireland4. Germany5. Spain6. Italy7. Austria8. France9. Czech Republic10. England/Wales

Membership• Aspiring Members:1. Norway2. Scotland3. Portugal4. Poland5. Switzerland6. Netherlands7. Finland8. Hungary

What Alfa Europe DoesMake the condition better known• To Medics – especially General Practice• To Researchers and Institutions• To Politicians – local and European• To Regulators – national and European• To the Industry

What Alfa Europe Does cont.Assist National GroupsDevelop the FederationEncourage members’ participation inProgrammesLobby for ImprovementsPatient / Peer SupportPatient Assistance (e.g. travel & relocation)

Medical KnowledgeAlfa Europe can devise and send out Info.Packs in different languages.Doctors become aware• Will begin to look for Alpha-1• Will discover it more• Will prescribe for it• Will encourage families to be tested

Researchers and Institutes• Generate interest by offering research• Generate/Encourage trans-nationalresearch• May lead to new Therapies• Get funding for patient development projects

Political Awareness of Alpha-1• Health is becoming a bigger issue in EU• A presence in Brussels• WHO and EMEA can be influenced• EU interest in supporting rare diseases• EURORDIS- A good rep. for rare diseases in EuropeA new member of EPPOSI ( European Platform forpatient Groups, Science and Industry)

Regulator Knowledge of Alpha-1• National, EMEA, WHO• Getting orphan drugs status• Support new therapy development• EMEA see patient groups as partners• Need for both lay and medical info• Remuneration issues can be tackledtogether

Industry Knowledge of Alpha-1• Preparation and development of therapies• Support for national and EU groups• Representation at their meetings- PPTA meetings participation• Preparation of information leaflets• Support for info meetings-national andinternational• Identify clinical trials opportunities• Does Industry want to see a strong Alfa Europe?

Benefits of Alfa EuropeAlpha-1 Detection Programmes:• Need to be encouraged at EU level• Families encouraged to participate• Discrimination issues can be dealt with• Trans-EU cooperation on issues• Detection meetings by Telacris

Patient participation with EMEA etc• Criteria to be fulfilled:- Legitimacy- Mission/Objectives- Activities- Representation- Structure- Accountability and Consultation Modalities- Transparency

Alfa Europe – a lobbyistTo be a lobbyist we need• Proper structure• Strong support• Proper legislation• Know politicians, regulators, industry• A clear Mandate re. issues (therapies,provision of medication, remuneration)• A permanent presence

Alpha Europe and Patient/FamilySupport• Help set up and support national groups• Ensure continuity of treatment(movement, vacations etc)• Provide information in your language• Help break down feeling of isolation

Sweden: Challenges• POLITICAL – lobbying – awareness - letters• MEDICAL – awareness programmes• RARE DISEASES – eurordis – alfa europe• TREATMENT – MUTUAL RECOGNITIONPROGRAMME – reimbursement – clinical trials.• ORPHAN DRUG – EMEA, EURORDIS etc.• ALPHA-1 CENTRES – lung rehab, physiotherapyetc

Sweden: Actions• LOBBY• NETWORK• BUILD ALLIANCES• DON’T WORK ALONE• USE ASSISTANCE AGENCIES• STRENGTH IN UNITY• UNITE AND COOPERATE WITH OTHERS

Alfa Europe – The Vision• There is Strength in Unity• Cooperation/Sharing worldwide• Alphas Helping Alphas• Overcoming difference• Being imaginative• Being positive to developments

A Motto“You see things that are and ask:Why?I dream things that never were and ask:Why not?”George Bernard Shaw

Alfa EuropeThank YouThe Future