Rare Disease Day 2014 – let’s Join Together for Better Care!

Rare Disease Day 2014 – let’s Join Together for Better Care!


Dear members and supporters, 

Life With Challenges is already  planning the Rare Disease Day, 28th of February, 2014.

On 28th of February,  organize a press conference for media – discussion with patients/families/doctors/ health institutions under the motto of the Rare Disease Day 2014 – let’s Join Together for Better Care!, as we are in preparation of the National Strategy for rare diseases.

Also we will have sponsors/donors/supporters/volunteer  event as we are celebrating 5 years of the existence of the organization. We will award certificates to all people/companies/organizations/institutions that supported us through the years.

We will have a cocktail afterwards – participants gathering to discuss future improvements in treatment and care in order to improve quality of life, and to share experience on what does it mean to live with a rare disease.

Day before  rare disease day (27th of February) we will organize education events for students from the Medicine and Pharmacy Faculty with cooperation with the University Children Clinic Skopje.

We are also organizing exhibition On 28th of february: One day of my life with a rare disease.

If you have other suggestions or ideas for Rare Disease Day, we are here to review them.

Regarding Rare Disease Day events we are also open for cooperation with other Macedonian Organizations that want to contribute and participate in Rare Disease Day Activities – Together we are stronger – Let’s join together for better care!

Step 1: If you are an organization that represents some specific rare disease you are welcome to be our partner in marking the Rare Disease Day

Step 2: If you are  organization or institution that is not working specifically in the area of rare diseases you are welcome to join as our supporter.

Step 3: If you are individual you can volunteer and support our activities

Step 4: Contact us and send us information about how you want to participate in the Rare Disease Day activities: zivotsopredizvici@gmail.com, info@challenges.mk

Step 5: Be a part of Rare Disease Day 2014 – Let’s Join Together for Better Care!

Regarding the exhibition, we need your help and cooperation. 

Step 1: Do you want to participate in the exhibition?

Step 2: Do you have a photograph with a good resolution that you want to share? (If not, please call us and we will arrange a photographer, or make photo – the holidays are coming and it is a great opportunity for family pictures and sport activities)

Step 3: Write a short story about your life with a rare disease as a patient or as a parent, friend, spouse … or write a motto that gives you courage to face life with a rare diseases ..

Step 4: Contact us and send us a picture and a story: zivotsopredizvici@gmail.com, info@challenges.mk

Step 5: The pictures will be printed in poster format together with your story or motto.

Step 6: Participate in our Rare Disease Day activities and help in raising public and institution awareness about rare diseases

Step 7: Be a part of Rare Disease Day 2014 – Let’s Join Together for Better Care!

We are expecting your e-mail or phone call.

Life With Challenges wishes all of you Happy Holidays!

Srekni praznici, 2014, Zivot so predizvici

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