Announcing the ALK International Development Alliance (IDA)
As part of the ALK Positive mission statement the ALK Positive Inc Board of Directors is committed to assisting ALK patients worldwide. Whilst there are many international members in the independent ALK Facebook Support Group, we are also greatly encouraged by the numerous international patients and caregivers who have subscribed to our newsletter.
Amongst other attributes, we also currently have international participation in the ALKtALK talks with both the audience and speakers, in international fundraising, as well as, more recently, participation in various medical and scientific meetings held throughout the world, and finally ad hoc cooperation with several overseas ALK country organizations, mainly in Europe.
With the participation of various board members where requested, we are now ready to move on to the next step of the international development process and take these initial encouraging steps and make them into a more formal alliance, through three main channels:
1. Mentorship and leadership (lead Duncan Preece)
a. Duncan has extensive experience of international collaboration in the health care field and has led more than 120 successful international missions
b. Find, evaluate, decide, prepare, encourage and support local leaders or potential leaders in each of our future Alliance partners
c. Mentorship, leadership and logistical support and assistance in helping the volunteers on the ground either to form a Support Group or a non-profit association, or more likely, both these options
d. A specific one-page website template provided and maintained by us, as part of our new website. This would be customizable to each country in their own language through Google translate, and would include a list of local oncologists with some knowledge of ALK
e. Linked together through a free version of MS Teams
2. Medical and scientific assistance (lead Dr. Ken Culver)
a. Ken has vast amounts of experience working with Key Opinion Leaders (KOLs) and companies around the world and can bring considerable amounts of added value
b. Share learnings from meetings, e.g. TTLC and ELCC
c. Update on progress of grants
d. Discuss funding proposals to align and avoid duplication
e. Share the clinical trial reviews that we are doing to determine the critical ones for recruitment
f. Coordinate engagement with KOL’s (e.g. ASCO, ESMO)
g. Collaborate on clinical trial recruitment initiatives
h. Provide medical support for KOL meetings and regional lung cancer meetings
i. Expand Second Opinion Group together
j. Collaborate on the new SAB membership
k. Partner on common education materials for patients and oncologists
3. Advocacy, fundraising and social media
a. Collaboration between our in-house expertise and the local leaders through the best practices in terms of advocacy, fundraising and social media
b. The scope of this part of the Alliance needs to be undertaken with the future lead
Initially, we intend to take our proposal to two countries, Australia and Canada, so that we can learn and improve with contact in similar cultures before we proceed on to other countries and cultures.
We also intend to collaborate to the best of our ability with other existing organizations and reinforce our objective to assist ALK Positive patients wherever they may be in the world, and wherever this is legally or organizationally possible.
Where there exists more than one ALK organization in a specific country, the Board may be requested to make a decision as to which should be the preferred Alliance partner, or indeed whether they should all be all be so recognized.
If you have interest in this, or questions regarding it, please contact Duncan Preece: duncan.preece@alkpositive.org