EUPATI is a patient-centered team of 30 organizations, led by the European Patients' Forum, with partners from patient organizations (The European Genetic Alliance, the European AIDS Treatment Group, and EURORDIS), university and not-for-profit organisations expert in patient and public engagement, along with many European pharmaceutical companies. The common goal is to help patient advocates be more educated
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At the congress you will also have a possibility to see the exhibition Hug Rarity developed by Lice v Lice, NARDM and Life With Challenges.
On 20-21st april 2013 patients and doctors from the Balkan countries gathered in Park-hotel “Moskva” Sofia to share their experience with living with a rare disease and the treatment and socialization problems they face at the Second Balkan RD Conference “Better communication – better treatment”.
The conference was opened by the Chairman of the National Alliance
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5th – 7th April 2013 in Sarajevo (BiH)
This was the biggest meeting of Gaucher and LSD patients in our region ever.
There were more than 100 participants:
‐ around 25 LSD patients,
‐ 18 physicians, nurses and researchers,
‐ families and friends of the patients,
‐ representatives of the following patient associations:
o Rare Disease Association of Bosnia and Herzegovina,
o Slovenian
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Life With Challenges, HAE Macedonia & HEMOLOG
Association of citizens for rare diseases "Life With Challenges“ together with the association for Hereditary Angioedema - HAE Macedonia and the association for hemophilia HEMOLOG , will join the Skopje Marathon with a group running under the motto Running for a better life.
Link to Skopje Marathon page - http://www.skopskimaraton.com.mk/index.html
Link for participation in the marathon - http://www.skopskimaraton.com.mk/prijavaonline.html
Note:
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Rare Disease Day- Life with a Rare Disease: Day by Day, Hand in Hand
Respected,
On the occasion of the World Day of Rare Diseases the Association of Citizens with Rare Disease “Life with Challenges”, this time with joint forces of 12 organisations from the National Alliance for Rare Disease in Macedonia (NARDM) organized and event to
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