Tuesday June 11th, 2019

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Call for action

CALL FOR ACTION

DONATE 0,033 EUR PER 1 METER CLIMBED

Dear supporters,

It is our pleasure to inform you that you have a possibility to get involved in the action for the support of families that face rare diseases.

The association of citizens for rare diseases LIFE WITH CHALLENGES for several years has a helpline for support and help of families and patients that face life with rare diseases.

The association is opened for cooperation with medical professionals, scientists, volunteers and supporters that are willing to advocate and support a better quality of life of patients and families with rare diseases.

This year through the helpline in the period of January to end of April 2019, we managed to accomplish the following:

  • over 200 telephone calls and over 40 face to face meetings with patients and families
  • 2 newly founded associations that we supported to start advocating
  • we connected over 10 families from North Macedonia with families in the region that have the same rare disease
  • 20 people are already using our psychological services
  • we started with the translation of information for 1000 rare diseases
  • continuously we are sharing new information on our web site and social media, that are of interest for rare diseases.

With the goal to continue with our successful work, we are gathering financial resources for the next year so that we continue to support families and patients with rare diseases from North Macedonia.

In June, July and August we have an action for climbing mountain tops, where the group of mountaineers (Milenka Sarovik, Hristofor Sarakinov, and Vasko Rusevski) will climb 11980 meters.

This will happen on Elbrus (highest mountain top in Europe), Triglav (highest mountain top in Slovenia), Punta Penia (Italy), Grossglockner (highest top in Austria) and Cugshpice (highest mountain top in Germany).

It will be of great help if you can support this action and donate 0,003 EUR per meter climbed. Support our helpline, support families and patients with rare diseases from North Macedonia.

A donation will be realized in a number of meters that you choose. All donors will be published on our web page, in press releases for media and company logos will be put on a flag that will be carried on the climbs.

Thank you for supporting us,

Bank account for donations

Name of the Account Holder Association of citizens for rare diseases LIfe With Challenges – Bitola  (Zdruzenie na gragjani za retki bolesti Zivot so Predizvici – Bitola)
VAT code or Fiscal Code 4002009513938
Address of the Account Holder Boris Radosavlevik – Goce, 12, 7000 Bitola, R. Macedonia
IBAN Code MK 07 210 7220000235 41
SWIFT Code TUTNMK22
Name of the Bank NLB Tutnska Banka AD Skopje
Address of the Bank Vodnjanska 1, 1000 Skopje, R. Macedonia
Transaction account number for MK donations 210 0649841801 71

Sincerely,

Vesna Aleksovska, chair of LIFE WITH CHALLENGES,

zivotsopredizvici@gmail.com

+38970705446


Живот со предизвици е членка на дледниве организации: (iapo.org.uk), (eurordis.org), (eurogaucher.org), (mds-alliance.org), (www.worldpompe.org), (NARB Makedonija), (apo.org.mk),