CML Advocates Network

CONTACT INFORMATION:

Address: 33 Pho Niyom Rd, Mark Khaeng,

Mueang, Udonthani District, 41000 Thailand 

Tel.: +66974564938

Email: udoncml@gmail.com

KEY CONTACT

Mr.Kittisak Sirithonnavapus (Chairman from 2012 to date )

Email: kittisak.sirithonnavapus@gmail.com

BRIEF DESCRIPTION OF ORGANISATION:

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 of 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 in order to share experiences and get education about CML from professionals and from international conference.

KEY OBJECTIVES AND KEY INITIATIVES:

• Happy Living with CML
• to increase encouragement to members.
• Up-to-date CML information to members.
• Share experiences and get education about CML from professionals and from an international conference.

NUMBER OF MEMBERS

350 - 400 members are patients and caregivers, only CML from six province areas.

 

CONTACT INFORMATION:

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

Tel. +886-2-25643853
Fax +886-2-25643862

Office e-mail address of the organisation
marrows@ms34.hinet.net

Website address
http://www.tbmta.org.tw/

KEY CONTACT:

Donny Ou, Board Member

BRIEF DESCRIPTION OF ORGANIZATION:

TBMTA is a patient group that offers mental support to patients and family members and holds activities to broadcast knowledge about blood related illness and how to take care of patients. All members are leukemia patients or patients' family members.

KEY OBJECTIVES AND INITIATIVES:

TBMTA key objectives are, by holding seminars and/or indoor/outdoor activities,
(1) To educate people with correct knowledge about severe blood related diseases and proper therapy.
(2) To broadcast the knowledge about blood related cancer, updated medical therapy and information about how to take care of patients and care givers themselves physicially and mentally.

MEMBERS:

260 (status: Feb 2016)

CONTACT INFORMATION:

1005 Shinhwa Bldg, 34-1 Mapo-dong, Mapo-gu,

Seoul 121-735,

Korea

Telephone: 02-3432-0807
Fax: 02-3432-0609
http://www.bloodcancer.or.kr 

bloodcancer@daum.net

 

KEY CONTACT:

Lee Chul Hwan (executive director)

 

BRIEF DESCRIPTION OF ORGANIZATION:

The association is a non-profit corporation, established in 1995, to help those who suffer from leukemia and blood diseases. It is a registered organization under the Ministry of Health and Welfare.
Our major projects include medical bills support, counseling, medical seminar, publication, cultural event, and initiatives to improve the nation’s medical insurance system.
One of our goals is to present plausible alternatives for those who struggle both physically and mentally against blood diseases to receive better treatment. We hope to build a social atmosphere in which ordinary people care for the weak and sick and are willing to participate in helpful voluntary activities.

 

KEY INITIATIVES:

- Off line medical seminar
- Phone counseling
- Publication of monthly newsletter
- Medical expense support
- Cultural event
- Manage and support various patient community by disease
- Improving insurance and system

 

NUMBER OF MEMBERS:

6000 (February 2013)

CONTACT INFORMATION:

Mailing/Postal Address:
16/2, CAT-III, I-8/1, ISLAMABAD, PAKISTAN

Telephone: +92 333 511 734 4
Facsimile: -
Email: info@kiranpk.org

http://www.kiranpk.org

KEY CONTACT:

Name: MUHAMMAD RAFTAZ KAYANI
Position: CORE GROUP LEADER ISLAMABAD & LAHORE

ORGANIZATIONAL OBJECTIVES:

Elimination of Cancer (CML & GIST) from the planet Earth.
To aware the patient community that this disease is not a warrant of death, we can fight against it and we have to defeat it.
Our courage and efforts can improve the quality of patient community.

BRIEF DESCRIPTION OF ORGANIZATION:

Name: KIRAN
When established: 2009
Number of office bearers: 6 (06/2013) --> 4 male, 2 female
Average age: 40-50 years
Aims: To mitigate the miseries of the humanity specially in the field of health.

NUMBER OF MEMBERS (06/2013)

1000

COUNTRIES IN WHICH ORGANIZATION HAS A SIGNIFICANT MEMBERSHIP BASE:

Pakistan

 

CONTACT INFORMATION:

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

Telephone: 91 22 6660 3320
Fax: 91 22 6660 3322
Website: http://friendsofmax.info/home/
EMail: friendsofmax@gmail.com

BRIEF DESCRIPTION OF ORGANIZATION:

Friends of Max is the Indian patient support group arm of The Max Foundation. It has chapters in seven 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 honour to have been one of the initiators of this movement and appointed its Trustee.

CONTACT INFORMATION:

Max Family
A3-03-01, Blok A
Hata Square
Jalan Mewah 1/3
Pandan Mewah
68000 Ampang,s Selangor
Malaysia

Telephone: +603-42969088
Fax: +603-42969088
http://mymaxfamily.blogspot.com/
mymaxfamily@gmail.com

KEY CONTACT:

ABD RAZAK MUHAMAD (President)

BRIEF DESCRIPTION OF ORGANIZATION:

MaxFamily was formed on July 2006 by a group of people who want to make a difference in people living with CML, by supporting each others in possible ways. MF realized that patient support groups have became one of the established resources of health care in most of the western countries, but in many other countries, including Malaysia, support groups are still considered as a fledgling approach. Supports from various aspects from people around are very significant in helping someone who is diagnosed with CML to overcome challenges, improving the quality of life, as well as survival rates.

ORGANIZATIONAL OBJECTIVES:

1. To help & support each other in various aspects, including information, emotion and psychosocial.
2. To create awareness about CML among patients (care givers & family members) specifically and among public generally.
3. To promote self-empowerment & advocacy among patients, care givers & family members.
4. To serve as 'reference centre' to all local CML patients.
5. To coordinate activities for CML patients locally
   
   
   

KEY INITIATIVES:

1. Workshops: Covers educational talk and followed by group discussion with the hematologist which are conducted in various languages, taking into consideration of Malaysian's multi-races culture. Also covers motivational session. Held 4 times a year (3 months apart)
2. Bulletins: 3 monthly issues covering CML related and emotional/psychosocial supports articles, highlights on past event and information on future events.
3. Educational pamphlets: Covers various aspects on disease information, nutrition etc.

NUMBER OF MEMBERS:

450-500 patients (July 2008)