Thursday January 16th, 2014

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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.

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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!

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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

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“First CEI Conference for building regional network of organizations for Rare Diseases”

Dear collaborators,

The Association of citizens for rare diseases “Life With Challenges”, invites you to the First CEI Conference for building regional network of organizations for Rare Diseases”, on 23rd – 24th of March, 2014 in Skopje, R. Macedonia.

First CEI Conference for building regional network of organizations for Rare Diseases is a project that will contribute to strengthening of the capacities of the organizations and to increasing networking and communication between the organizations from the CEI region that work in the field of rare diseases. With this meeting we will contribute towards raising awareness (general public, government institutions, and medical professionals) about rare diseases in Macedonia and the CEI Region.

The focus of the project First CEI Conference for building regional network of organizations for Rare Diseases is on strengthening leadership in advocacy and lobbying for patients’ rights. The conference meeting is for sharing best practices in advocating for patients’ rights and sharing information on implementation of National Plans/Strategies on rare diseases in different countries.

 “First CEI Conference for building regional network of organizations for Rare Diseases”, on 23rd – 24th of March, 2014 in Skopje, R. Macedonia.

Draft Agenda

23rd of March, 2014, Hotel Porta, Skopje, R. Macedonia

10:00 – 10:30 h.

Opening of the conference

Vesna Aleksovska, President of the Association of citizens for rare diseases Life With Challenges – Bitola

Drancho Apostolovski, National Coordinator for Macedonia of the Central European Initiative (CEI): Presentation on CEI

10:30 – 10:45 h.

Coffee Break

10:45 – 13:30 h.

Rare Diseases in the Region

Anja Kladar, Vice-president of the Croatian Alliance for Rare Diseases: Presentation on Orphanet Croatia

Nikolina Covic, Social worker at the Croatian Alliance for Rare Diseases: Presentation on support and social rehabilitation for patients with rare diseases, Croatia

Todor Mangarov, President of the Association for Pulmonary Hypertension, Bulgaria: Presentation on the situation of patients with PH in Bulgaria

Marija Joldic, President of the Executive Board of the National Organization for Rare Diseases – Serbia: Presentation on the situation of patients with rare diseases in Serbia

Jasminka Jezdimirovic, President of Association for Rare diseases and disability in Serbia: Presentation on situation of PKU patients in Serbia

Borislav Djuric, President of the organization for rare diseases in Bosnia and Herzegovina: Presentation on situation of patients with rare diseases in Bosnia and Herzegovina

Viktorija Penova, Patient with FOP: Presentation on Life with FOP disease, R. Macedonia

Statements from patients from Kosovo and Albania

13:30 – 14:30 h.

Lunch Break

14:30 – 16:30 h.

Advocacy for patients rights – sharing experience

Vlasta Zmazek, Member of the Board of Directors of European Organization for Rare Diseases (EURORDIS): Presentation on EURORDIS

Irena Znidar, Member of the Board of Directors of European Gaucher Alliance (EGA): Presentation on EGA

Fernanda Torquati, President of the Italian Gaucher Association: Presentation on strengthening patients

Nina Racila, President of the Gaucher Association in Moldova: Presentation on the situation of patients with Gaucher disease in Moldova

Sandra Pavlovic, President of DEBRA, Serbia: Presentation on DEBRA

Polona Zakoshek, President of DEBRA, Slovenia: Presentation on DEBRA

Discussion

19:00 – 22.00 h.

Sightseeing tour and dinner in Skopje / Old Bazaar: Meeting place – at the hotel lobby

Agenda

24th of March, 2014, Hotel Porta, Skopje, R. Macedonia

10:00 – 10:45h.

Press conference – media statements

Vesna Aleksovska, President of the Association of citizens for rare diseases Life With Challenges – Bitola

Ms. Maja Parnardzieva Zmejkova, Director of the Health Insurance Fund Macedonia

Prof. D-r Aspazija Sofijanova, Director of the University Children Clinic – Skopje, President of the Commission for Rare Diseases

Prof. Dijana Plaseska Karanfilska, Macedonian Academy for Science and Art

Katerina Aleksoska, Director of the Bureau of Drugs, R. Macedonnia

Statements from representatives from participating countries

10:45 – 11:00 h.

Coffee Break

11:00 – 13:30 h.

Treatment and care of patients with rare diseases

D-r Vukashin Andric (D-r Vulnet Ferati), Genzyme, Sanofi Aventis: Presentation on the Humanitarian Aid Program and Innovation in treatment for rare diseases

Gordana Lenarcic,mag. farm., Medical Affairs Manager, Celgene International: Presentation on innovation in treatment for rare diseases

D-r Vujkovac Bojan: Presentation on Fabry Centar, Slovenia

Ass. D-r Biljana Coneska Jovanova, University Children Clinic – Skopje, Department for Hematology and Oncology: Presentation on Enzyme Replacement Therapy in Patients with Gaucher Type 1

Prof. Dijana Plaseska Karanfilska, Macedonian Academy for Science and Art:Presentation on Rare Diseases genetics in the era of next generation sequencing

Prof. D-r Zoran Gucev, University Children Clinic – Skopje, Endocrinology Department: Presentation on MPS (Hunter) patients treatment in Macedonia

Prof. D-r Velibor Tasik, University Children Clinic – Skopje, Nephrology Department: Presentation on Rare Diseases in Nephrology

Ass. D-r Ivan Milev, Special Hospital for Chirurgical Diseases, Filip II, Skopje: Presentation on treatment and situation of patients with Pulmonary Hypertension in R. Macedonia

Enrico Blumer: Presentation of a special project: Accessibility for people with disability in R. Macedonia

13:30 – 14:00 h.

Conclusions and evaluation of the conference

14:00 – 15:30 h.

Lunch and departure of participants

Sincerely,

Vesna Aleksovska,

President of “Life With Challenges”

 

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