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International conference: Paving the road to therapy

Hello everyone,

From 17 till 19 March there will be an international conference about Lama2-MD in Barcelona. The conference LAMA2 Muscular Dystrophy (LAMA2-MD): Paving the road to therapy is organised by Maastricht University and the Dutch foundation Voor Sara, in cooperation with Lama 2-Europe. This 3-day conference is largely funded by a grant of the European Joint Programme for Rare Disease. The goal of the conference is to exchange knowledge and research progress on LAMA2-MD and establish fruitful collaborations between researchers, clinicians and patient representatives.

The scientific part is by invitation only, but on Saturday 18th March we also have an online program for patients and families. You are all invited to join and learn more about the research, clinical care and patient advocacies. We are working together with the finest experts in the field and offer you the opportunity to ask them all the questions you have.

The patient part of this conference starts with six lectures (in English). After that there are online breakout sessions divided by language (English, Spanish, French, German, Turkish and Portuguese) with several themes (patient advocacy, natural history, clinical care, pulmonary care and research).

If you want join the online patient part of the conference we ask you to register via this link:

https://forms.gle/fQDoXAA4Ae7bCUrp9

If you want to receive news and updates by email, please send an email to info@voorsara.nl and we will keep you updated!

Program Saturday 18th March, 13-19 pm CET:

  • 13.00 pm General explanation about Lama2 – by Reghan Foley
  • 13.30 pm Overall view about the scientific researches being done at the moment – by Madeleine Durbeej
  • 14.00 pm Overall view about the natural history studies – by Andrea Klein
  • 14.30 pm European and international cooperation between patients and patientorganisations – by Celine Damon/Severine Berreur
  • 15.00 pm Coffee Break
  • 15.30 pm Pulmonary care – by Susana Quiano Roy
  • 16.00 pm Improving quality of life thanks to physio and other therapies – by Clara Gontijo Camelo
  • 17.00 – 19.00 pm Breakout sessions per theme, online and open for everyone to ask questions (see schedule in the registration link)

In the online breakout sessions for patients and families these experts will be present:

  • Patient advocacy (ImpulsaT Spain, Voor Sara Holland, Lama2 France, Cure CMD, US)
  • Natural history (Andrea Klein, Nicol Voerman, Karlijn Bouman, Stefano Previtali, Andreea Seferian, Anna Sarkozy)
  • Clinical Care (Reghan Foley, Clara Gontijo Camelo)
  • Research 1 (Carsten Bonneman, Valérie Allamand, Jorge Oliveira, Tim Neberman, Andreas Roos, Jacek Stępniewski /Józef Dulak)
  • Research 2 (Madeleine Durbeej, Florence van Tienen, Bert Smeets, Jordi Barquinero, Markus Rüegg, Peter Yurchenco, Veronica Pini, Dwi Kemaladewi)
  • Pulmonary Care (Susana Quijanoroy)

To read more about the experts and the rest of the conference, please visit our website: https://www.lama2-mdconference2023.com