CML Advocates Network

Contact address:

Udonthani Hospital 33 Pho Niyom Rd, Mark Khaeng,
Muang
Udonthani 41000
Thailand

Telephone: +66974564938

Email: udoncml@gmail.com

LinkedIn: Line OA ID: @qbq3782z

Key contacts:

Kittisak Sirithonnavapus - Chairman
Email: udoncml@gmail.com
Phone: +66974564938
Mobile: +66858273242

Udomporn Theeraphap
Email: hwanna42@gmail.com
Phone: +66834136069

Brief description of organization:

UDON CML Patients Group was established in 2010 by Doctor Saranya Phongudom who is a hematology doctor and Mrs. Udomluck Rangsiyaponrat who is a pharmacist at Udonthani Hospital. The group provides the most up-to-date CML information to CML patients, caregivers, members’ activities, the discussion about the disease between patients and doctors. The group also holds an annual group meeting/seminar among CML members to share experiences and get education about CML from professionals and an international conference.

Audience/Constituency:

UDON CML Patients Group has members from six provinces in the north-eastern of Thailand.
1.Udono Thani 2. Nong Khai 3. Nong Bua Lamphu 4.Loei 5. Bueng Khan and 6. Sakhon Nakorn.

Organizational objectives and key programs:

Our organizational objectives are:

• Happy Living with CML an annual meeting.
• Increase encouragement to members.
• Up-to-date CML information to members.
• Face-to-face communications to members.
• Share experiences and get education about CML from professionals and from an international conference.

Our key programs are:

• Happy Living with CML annual meeting.
• Face-to-face communications to members.
• Visit members and family.
• World CML Day activities
• Up to date CML information to members.

Board of Directors:

15

Year of establishment:

2010

Year of becoming a CML Member:

2011

Members:

101 - 250

Contact address:

11F-6, No. 72, Section 1, Chung-Shan North Road
Taipei
TAIWAN 10444
TAIWAN

Telephone: +886225643927

Website: http://www.tbmta.org.tw/
Email: marrows@ms34.hinet.net

Facebook: TBMTA.ORG

Key contacts:

Donny Ou - Board Member
Email: marrows@ms34.hinet.net
Phone: +886225643927
Mobile: +928728066

Brief description of organization:

Blood-Related Cancer Patient Group.

Audience/Constituency:

Blood-Related Cancer Patients and/or Patients' family.

Ways of communication with constituency:

Seminar / Telephone / Member Meeting / Facebook

Organizational objectives and key programs:

Our organizational objectives are:

• Update Knowledge about Blood-Related Cancers;
• Hold Educational Seminars to Public;
• Consult to Patients and/or Patients' Family about how to care for patients;
• Offer Psychological Support to Patients and/or Patients' Family;
• Assist Patients in Hospital Ward.

Our key programs are:

• Educational Seminars

Board of Directors:

8

Year of establishment:

1999

Year of becoming a CML Member:

2015

Members:

250+

Contact address:

393, Hangang-daero, Yongsan-gu
Seoul
None 4320
South Korea

Telephone: +82234320807

Website: http://www.kbdca.or.kr/main.php
Email: bloodcancer@daum.net

Facebook: https://www.facebook.com/korbloodcancer
Twitter: https://twitter.com/korbloodcancer?lang=ko
Instagram: https://www.instagram.com/kbdca/?hl=ko

Key contacts:

Chul-Whan None Lee - Executive Director
Email: bloodcancer@daum.net
Phone: +827040993664
Mobile: +821050504861

Won young Jang - Manager
Email: blooddiseasecancer@gmail.com
Phone: +827040993665
Mobile: +821064026553

Brief description of organization:

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. We help patients with blood diseases and cancer to be cured promptly and to complete their rehabilitation successfully.

Audience/Constituency:

Blood disease and cancer patients.

Ways of communication with constituency:

We provide a moment to rest between long and exhausting ways to win against diseases by providing publication of Newsletter “Hope” to our constituency.

Organizational objectives and key programs:

Our organizational objectives are:

• Establishing a paradigm for sustainable and proper patient support;
• Development of personalized education 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;
• Advocacy activities for developing new medicines and early insurance for patients.

Our key programs are:

• Financial Support - Pharmaceutical expenses;
• Financial Support -Medical expenses;
• Educational support - Hematology, Oncology;
• Emotional support - Publication of Newsletter “Hope”;
• Overseas Exchange.

Board of Directors:

15

Year of establishment:

1995

Year of becoming a CML Member:

2014

Members:

20

Contact address:

H/No -36,street 20, G-13/3
Islamabad
Federal 44000
Pakistan

Phone: +923335117344

Website address: http://www.kiranpk.org
E-Mail: kayani4u@gmail.com

Key contacts:

Professor Muhammad Raftaz Kayani - CML Core Group Leader
E-mail: kayani4u@gmail.com
Phone: +923335117344

Mr. Mohammad Zeeshan Ali - Core Group Leader
E-mail: kayani29@gmail.com
Phone: +923215000143

Brief description of organization:

If you, or a loved one, are living with CML & GIST, you are not alone. It's a difficult time. Dealing with treatment and its side effects can be a struggle for both patients and families. Juggling family, professional and financial responsibilities can be overwhelming. Coping with the emotional burden can be exhausting. Too often the practical and medical issues push the psychological issues aside. Patients often keep their deepest fears and worries to themselves, reluctant to share thoughts of hopelessness with family members who are supporting and caring for them. Caregivers and loved ones will keep some of their most private emotions to themselves as well, protecting the patient from feelings of anxiety, despair, and even anger.

KIRAN is a place where both patients and family members will find support, education and hope. Support groups address emotional issues for patients and families. Educational workshops get important questions answered in a non-clinical setting. Stress management programs enhance health and well being. Every program is offered free of charge. All are lead by professionals licensed in their fields of expertise. We do not offer medical treatments, alternative treatments, or hospice care. Our services are offered as a compliment to conventional treatment, although anyone undergoing any kind of cancer care is welcome. People come at diagnosis, during or at the end of treatment, at recurrence or several years out of treatment. They all come to learn they are not alone in their fight--whether for physical, emotional or spiritual recovery. Together, they regain a sense of control over their lives and ultimately discover that hope is a valuable tool irrespective of the stage of disease.

Audience/Constituency:

Punjab, Pakistan.

Ways of communication with constituency:

Seminars, Workshops, Walks, One-to-one settings.

Organizational objectives and key programs:

Our organizational objectives are:

• Reducing the CML & GIST mortality rate by focusing on individual behaviors, public policy, and provide support to underprivileged communities.
• Creating awareness more accessible for people in medically underserved communities.
• Creating an energizing and productive environment that care providers and volunteers want to join.
• Collaborating with partners to maximize the effectiveness and reach of the CML & GIST awareness programs and message.
• Disbursing grants, assistance and other financial support to deserving CML & GIST patients.

Our key programs are:

• WEEKLY SUPPORT GROUPS
• MONTHLY DISEASE SPECIFIC NETWORKING GROUPS
• HEALTHY LIFESTYLE
• SOCIAL PROGRAMS
• FUND RAISING

Board of Directors:

3

Year of establishment:

2009

Year of becoming a CML Member:

2011

Members

6

Contact address:

Secom Business Centre
A Block Basement Shivsagar Estate
Dr Annie Besant Road , Worli
Mumbai 400018
India
Mumbai
Maharashtra 400018
India

Telephone: +912266603320

Website: https://friendsofmax.info/
Email: friendsofmax@gmail.com

Facebook: https://www.facebook.com/CMLGISTsupportgroup
Twitter: https://twitter.com/Friends_Of_Max
LinkedIn: https://www.linkedin.com/in/friendsofmax/
Instagram: https://www.instagram.com/cmlgistsupportgroup/

Key contacts:

Mr. Aashray Paul - Communications Manager
Email: friendsofmax@gmail.com
Phone:+9122 66603320
Mobile: +918291203943

Viji Venkatesh - Managing Trustee
Email: venkatesh.viji@gmail.com
Mobile: +919820600906

Brief description of organization:

Friends of Max is the Indian patient support group arm of The Max Foundation. It has chapters in several major cities in the country and takes the greatest pride in putting into effective practice its motto "Together we Share and Learn" . Peer support group meetings are held all year round in various cities and an All India Meeting every year since its inception in 2005. As The Max Foundation representative in the Indian Subcontinent, it has been an honor to have been one of the initiators of this movement and appointed its Trustee.

Organizational objectives and key programs:

Our organizational objectives are:

• Education.
• Patient Support.
• Awareness.
• Bridging gap between physicians and patients.
• Partnering with international organizations to adopt best practices in India.

Our key programs are:

• Chai For Cancer.
• Patient Support Group Meetings.
• Leadership Summit.

Year of establishment:

2005

Year of becoming a CML Member:

2010

Members:

250+

Contact address:

Unit 1302, Blok A, Damansara Intan, No. 1, Jalan SS 20/27
Petaling Jaya
Selangor 47400
Malaysia

Telephone: +60377269903

Website: www.maxfamily.org
Email: mymaxfamily@gmail.com

Facebook: www.facebook.com/maxfamilymalaysia
Instagram: www.instagram/maxfamilymalaysia

Key contacts:

Abdul Razak - President
Email: mymaxfamily@gmail.com
Phone: +60377269903
Mobile: +60126663314

LI LI GAN - ASSISTANT SECRETARY CUM COMMITTEE MEMBER
Email: pat_ganll@hotmail.com
Phone: +60122074840

Brief description of organization:

Max Family Society Malaysia (Max Family) is a registered patient support group for blood and rare cancers.

We believe cancer treatment involves more than routine medical care. Through our multifaceted support, we embrace each individual in the community to ensure the cancer journey is never a lonely path.

It was started by 10 courageous Chronic Myeloid Leukemia patients and caregivers in 2006 with the support of The Max Foundation.

Today Max Family is empowered by cancer patients, caregivers, healthcare providers, and volunteers.

Cancer touches everyone. Our future together.

Audience/Constituency:

Cancer patients, caregivers, healthcare providers (to inc the government, pharmaceutical companies, hospitals, other government bodies), NGOs, and volunteers.

Ways of communication with constituency:

Physical through forums, meetings, workshops.
Digital platforms such as social media (FaceBooK, Instagram), emails, WhatsApp, SMS, website, zoom meetings.

Organizational objectives and key programs:

Our organizational objectives are:

• Informational & Emotional Support: We organize Let’s Sama-Sama patient-doctor gathering to increase patients’ understanding about their disease and treatment goals. Patients will be informed of the importance of treatment compliance, in turn leading to optimizing treatment outcomes. Experiences sharing among patients during the gathering can act as a form of strong emotional support as patients relate to each other and realize that they are not alone.
• Financial Support: Getting access to treatments is the basic right of everyone. At Max Family Society Malaysia, we are doing our best within our capacity to provide financial assistance to patients whose travel to hospitals is hindered by limited financial resources. The support available depend on the donation contributed by the public.
• Public Awareness Initiatives: Although Chronic Myeloid Leukemia (CML) is fairly treatable, CML survivors still suffer from social stigma. Society can be unfamiliar with CML, leading to ignorance, stereotyping, and discrimination. We aim to change public perception towards CML to address guilt, shame, and fear experienced by CML survivors and the people around them.

Our key programs are:

• Let's Sama-Sama workshop - patient Support sessions between physicians, patients & caregivers conducted via online platforms focussing on educational & scientific aspects of CMLS.
• Peer to Peer Sessions - online support sessions led by patient leaders for patients & caregivers focusing on emotional and social aspects of CML.
• Annual general meeting.
• Appreciation efforts for physicals, pharmacists, nurses.
• Learning workshops with NGSo on aspects such as fundraising, advocacy skills, to name a few.

Board of Directors:

10

Year of establishment:

2006

Year of becoming a CML Member:

2015

Members:

101 - 250