Cancer Support Community of Kosovo

Our goals

Don’t suffer in silence – Help us help you. Formed in March 2018, at CSCK we aim to raise awareness of cancer and offer support and information to patients, families and healthcare professionals across Kosovo. We campaign to increase the quality of life and make treatments available to those affected by the condition. Our interests are blood cancers and particularly myelodysplastic syndromes. Using our networks and national and international collaborations we aim to be the biggest cancer support platform in Kosovo by 2020.

How we do it?

If you live in Kosovo and are suffering from cancer then you’ve come to the right place. We will do the following:

Put you in touch with fellow patients who may share their experience with you.
Provide you with access to a list of consultants, specializing in your condition in Kosovo and nearby countries.
Provide you with help and advice.
Help you receive the most up to date information on your condition, patient stories and current research

Korea Blood Disease and Cancer Association

Korea Blood Disease and Cancer Association(KBDCA) is a non-profit organization that helps patients to cope with the blood disease and cancer through economic and emotional support and work on a variety of disease education programs to help people understand the disease and make their life better.

The goals of KBDCA are same as follows.
◦ Establishing a paradigm for sustainable and proper patient support
◦ Operation of personalized education programs and economic support programs for patients with blood diseases and cancer and their families
◦ Invigoration of academic research projects through interaction with related organizations at home and abroad
◦ Activities to promote health insurance coverage for new drugs and various advocacy activities for cancer patients, etc

KBDCA is contributing to the promotion of health and welfare by carrying out various projects
such as financial support, education & counseling programs, information support, and
overseas exchange.

KBDCA will strive to provide updated information and support for more patients and families.

KBDCA 한국혈액암협회

KBDCA는 환우분들이 경제적·정서적 지원을 통해 혈액질환 및 암에 대처할 수 있도록 돕는 비영리
법인입니다. 저희 협회는 환우분들이 혈액질환 및 암에 대해 이해하고 삶의 질을 개선할 수 있도록 다
양한 질환 교육 프로그램을 진행하고 있습니다.

KBDCA 한국혈액암협회의 목표는 아래와 같습니다. ◦ 지속적이고 올바른 환우 지원 패러다임 구축
◦ 혈액 및 암 환우 가족분들을 위한 질환별 맞춤 교육프로그램 및 경제적 지원 프로그램 운영
◦ 국내·외 관련 단체와의 교류를 통한 발전도모 및 학술연구 사업 활성화
◦ 신약·조기보험 활동 등 다양한 환우 옹호 (Advocacy) 활동

KBDCA는 혈액질환 및 암 환우분들께서 사회적인 관심과 배려 속에 조속히 완치되어 사회에 복귀할
수 있도록 경제적 지원 · 교육 · 상담 · 정보지원 · 해외교류 등 다양한 사업을 수행함으로써 보건복지
증진에 기여하고자 합니다. 저희 KBDCA는 더 많은 환우와 가족분들께 필요한 정보와 지원을 제공해 드리고자 앞으로도
끊임없이 노력하겠습니다. 연락처 : 이철환 (사무총장) / 장원영 (부장)
Tel +822 3432 0807
이메일 : bloodcancer@daum.net
www.kbdca.or.kr

CONNAÎTRE ET COMBATTRE LES MYÉLODYSPLASIES

L’association Connaître et Combattre les Myélodysplasies regroupe, depuis juillet 2006, des personnes atteintes de syndrome myélodysplasique et leurs proches.
L’association a l’appui du Groupe Francophone des Myélodysplasies (GFM).

Objectifs sont:

Favoriser les échanges d’information entre les patients et leurs proches à une échelle nationale et régionale.
Favoriser la recherche sur les myélodysplasies et la mise en place de nouveaux médicaments et traitements, en liaison avec les médecins du GFM.
Contribuer au progrès des soins et de la prise en charge des patients.
Faciliter la relation des adhérents avec les spécialistes des myélodysplasies. Soutenir l’action du Groupe Francophone des Myélodysplasies (GFM) et collaborer avec lui.
Maintenir une veille sur les progrès obtenus dans le monde et organiser des réunions d’information en présence de spécialistes.

Since July 2006, our association has been supporting people suffering from Myelodysplastic Syndrome and their relatives with the help of the Francophone Group of Myelodysplasia (GFM).

Our objectives are:

Encourage the exchange of information between patients and their families at a national and regional level.
Promote research on MDS and the introduction of new drugs and treatments, in collaboration with GFM doctors.
Contributing to the advancement of patient treatment and care.
Facilitate the relationship of its members with MDS specialists. Support and collaborate with the Francophone Group of Myelodysplasia (GFM).
Keep up-to-date with the latest progress achieved around the world and organize informational meetings for patients with the presence of MDS specialists.

MDS Foundation, Inc.

The MDS Foundation, Inc. is an international organization established in 1994 by world renowned researchers dedicated to further scientific knowledge, patient support, and education in the myelodysplastic syndromes (MDS).

The Foundation is based on the premise that international cooperation will accelerate the process leading to the control and cure of MDS. The Foundation provides research grants for scientific investigators, sponsors international working groups of scientists and physicians to further diagnostic, prognostic and treatment techniques, and disseminates information on state of the art research, clinical trials and treatments among the profesional and patient communities.

The Foundation also refers patients to its collection of ‘MDS Centers of Excellence,’ maintains an electronic fórum on its website for interaction and Support among patients, and provides educational programs for both health care professionals and patients and their families.

Aplastic Anemia & MDS International Foundation

The Aplastic Anemia & MDS International Foundation is the world’s leading non-profit health organization dedicated to supporting patients and their families who are living with aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases.

We are a patient-focused, patient-centered organization serving patients and families throughout the three phases of bone marrow failure diseases:

The life-changing phase of diagnosis
The life threatening phase of treatment
The lifelong phase of living with a chronic disease

The Aplastic Anemia & MDS International Foundation provides answers, support and hope to thousands of patients and their families around the world.

Aplastic Anemia and Myelodysplasia Association of Canada

The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a volunteer-run organization supporting patients and caregivers across the country who are living with aplastic anemia, myelodysplastic syndrome (also called MDS or myelodysplasia) and paroxysmal nocturnal hemoglobinuria (PNH).

In addition to supporting patients and caregivers AAMAC also:

provides funds for research
works to increase awareness
provides education
advocacy
support for blood, bone marrow and stem cell donations

MDS UK Patient Support Group

We are the only group dedicated solely to MDS in the UK.
“Support, Information, Awareness and Campaigns for those affected by Myelodysplastic Syndromes”.

The majority of our committee members are either MDS patients themselves or relatives of a patient.

We were formally set up in 2008 and have two full-time employees as well as a part-time volunteer.

We are funded by donations, fundraisers and pharmaceutical grants.

We are delighted to cooperate with other MDS groups anywhere in the world – and look forward to meeting any new members to share best practices.

Our aims are:

To provide a networking service through which those newly diagnosed with MDS can share their experience with fellow sufferers.
To provide a help and advice telephone line 5 days a week.
To organise several national patient information meetings with specialist speakers.
To help patients create small regional support group meetings, to meet informally – or organise activities or small presentations.
To distribute information and raise awareness of MDS among patients, carers and health care professionals across the UK.
To provide access to a list of UK consultants, specialising in MDS.
To develop and maintain a website, providing information on MDS, latest news or research and clinical trials and a very active Patients Forum.
To run two Facebook pages (one public, one per invitation only) and a Twitter account.
To fund a research activity in MDS, that will benefit patients

Sarah Liptrott – European Institute of Oncology, Milan, Italy

Sarah Liptrott is a Clinical Research Nurse in the Division of Haematology/BMT at the IEO. She graduated from Liverpool University with a Bachelor of Nursing (Hons), and obtained her Masters Degree at Staffordshire University. Throughout her career, Sarah has specialised within oncology, working within surgery and medicine as well as chemotherapy units. In her role as Clinical Nurse Specialist she developed nurse led clinics and implemented nurse prescribing into the haemato-oncology field. She has worked as Clinical Trial Team Leader responsible for the research team and achievement of UK national targets. Sarah has authored or co-authored numerous articles in high-quality scientific journals as well as being an invited reviewer. Her educational developments include BMT training/chemotherapy/clinical trials in both UK and European settings. She has served on many committees including the European Group for Blood and Marrow Transplantation Nurses Group Research Sub Committee and is a member of the RCN – Cancer Forum and Haematology & BMT Forums.