Alfa Europe
Alfa Europe
Alfa Europe
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<strong>Alfa</strong> <strong>Europe</strong>A Federation for <strong>Europe</strong>•For Health•For AlphasLarry Warren, President <strong>Alfa</strong> <strong>Europe</strong>.CEO Alpha One Foundation, Ireland
The Business Model• The Features of <strong>Alfa</strong> <strong>Europe</strong>(What it looks like)• The Functions of <strong>Alfa</strong> <strong>Europe</strong>(What it does)• The Benefits of <strong>Alfa</strong> <strong>Europe</strong>(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 <strong>Alfa</strong> <strong>Europe</strong> DoesMake the condition better known• To Medics – especially General Practice• To Researchers and Institutions• To Politicians – local and <strong>Europe</strong>an• To Regulators – national and <strong>Europe</strong>an• To the Industry
What <strong>Alfa</strong> <strong>Europe</strong> Does cont.Assist National GroupsDevelop the FederationEncourage members’ participation inProgrammesLobby for ImprovementsPatient / Peer SupportPatient Assistance (e.g. travel & relocation)
Medical Knowledge<strong>Alfa</strong> <strong>Europe</strong> 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 <strong>Europe</strong>A new member of EPPOSI ( <strong>Europe</strong>an 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 <strong>Alfa</strong> <strong>Europe</strong>?
Benefits of <strong>Alfa</strong> <strong>Europe</strong>Alpha-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
<strong>Alfa</strong> <strong>Europe</strong> – 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 <strong>Europe</strong> 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
<strong>Alfa</strong> <strong>Europe</strong> – 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
<strong>Alfa</strong> <strong>Europe</strong>Thank YouThe Future