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Association Francophone des Glycogénose s

Association Francophone des Glycogénose s. Philip Maes, AFG President Milano, 2 October 2010 The association Strategic Direction. AFG : general info. 210 member families 160 patients Scientific Council : 13 specialists, presided by Pr. P. Labrune Dedicated workgroups for T II, III and V.

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Association Francophone des Glycogénose s

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  1. Association Francophone des Glycogénoses Philip Maes, AFG PresidentMilano, 2 October 2010The associationStrategic Direction

  2. AFG : general info • 210 member families • 160 patients • Scientific Council : 13 specialists, presided by Pr. P. Labrune • Dedicated workgroups for T II, III and V. • Administrative Council : 6 ACTIVE members, next year 8 members … • French speaking – but international orientation (members from 10 countries)

  3. The administrative council De gauche à droite: Florence Faure, secrétaire Philip Maes, président Stéphane Laderrière, conseiller informatique Quentin Ruby, candidat Valérie Mahé, trésor. Adj. Eric Dupont, secr. Adj. Alain Bichat, candidat Claude Guiraud, trésorier

  4. Statutary humanitarian assistance to all persons affected by GSD break their isolation share relevant information provide them and their families help and support. Implicit The reason to be is the disease, hence stimulating ways to combat this disease on all levels: Medical Research Dietary The goals of the AFG(And possibly of all GSD related associations) How to pursue the statutary goals in the long run? What strategies to fight the disease? How resolve conflict of interest between both goals?

  5. Healing the disease will have side-effects for our associations: Loss of crirical mass Loss of financial means Members become more isolated Disinterest for the rarest forms The AFG year 2020 The bad exemple: « la Meduse » the flagship of the French Navy, failed at 160 km from its goal

  6. Healing the disease will have side-effects for our associations: Loss of crirical mass Loss of financial means Members become more isolated Disinterest for the rarest forms Strategic Priorities Healing remains one of our goals, but we need to care about : • Better represent all forms, even the very rare ones. • Regroup int’ly the very rare forms, so they gain critical mass • Keep statutary goals in focus • Avoid exhausting our financial means on research, but keep stimulating research The bad example: « la Meduse » the flagship of the French Navy, failed at 160 km from its goal

  7. International expectations • Together, we can do more to achieve our goals: • Communication • Common information, workgroup interworking • Network of GSD associations: keep it going – even without a formal structure. • Scientifical • Our hope : make progress together, leverage as a worldwide community.

  8. Thank You! • AIG Italy for organising this event • For participating • Constructive discussions that have made this event become WorldWide!

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