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?
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.
zivotsopredizvici@gmail.com, 070 705 446
Theme: Care
Slogan: Join Together for Better Care
Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment. Care can consist of medicines, products and devices, expert medical consultation, physical therapy, social services, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members. Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to Join Together for Better Care.
Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and millions and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they are not alone.
Healthcare professionals, researchers, pharmaceutical companies, and policy makers also frequently feel isolated in their struggle to find and provide care for rare diseases. Experience shows that bringing together scattered knowledge and resources for people living with rare diseases is the most efficient and effective way to mobilise the care patients and families need and deserve. In Europe, there are several areas in which access to rare disease care is advancing:
Shaping policies to improve access to medicinal products for rare diseases
Identifying and improving access to specialised social services for rare diseases
Centres of Expertise and European Network References
National rare disease plans for countries in the European Union … and beyond
The theme for 2014 highlights that the many different facets of rare disease care represents a universal need for patients and their families around the world. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary.
Considering rare diseases from an international perspective is also essential in order to send a strong message of hope to the millions of rare disease patients and families throughout the world who can break their isolation through a vast, united international network of solidarity. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need.
Let’s Join Together for Better Care!
Translation of invitation: Invitation – Rare Disease Day
