This is the Global CDKL5 Alliance (referred to Alliance hereafter) Manifesto/Charter/Memorandum (referred as Charter hereafter).

This Charter outlines the objectives of the Alliance, its guiding principles, organization, and operational guidelines.

RECITALS

  • CDKL5 (cyclin-dependent kinase-like 5) Deficiency Disorder (“CDD”) is a rare genetic disease that leads to frequent seizures shortly after birth and severe impairment in neurological development among many other issues. It is a burden to the family. 
  • All Member Organizations have direct or indirect involvement with issues relating to the management of symptoms, treatments or general condition of people with CDD.
  • The Member Organizations wish to jointly collaborate on shaping a more positive future for people with CDD around the world.
  • In consideration of the above, the Member Organizations agree as follows: The name of the organization shall be “Global CDKL5 Deficiency Disorder Alliance” or, in short, “Global CDKL5 Alliance”. The various versions of the global – multinational, universal, international, worldwide, CDKL5 or CDD, Alliance – united, together, refer to this Global CDKL5 Alliance. 

PURPOSE

The Alliance is set up with the following aims:

  • To improve growth of the global CDD community, building a stronger network among all the existing and future National Family Associations.
  • To help develop, and then support, an active network of CDD specialists in order to help share knowledge and spread best practices, with the goal of making the region clinical trial ready.
  • To support the goal of having all those living with CDD included in a national or international registry, duly authorized by the proper national or international authorities, where possible.
  • To identify opportunities for lobbying, in order to raise the scientific research, social, political and medical awareness of CDD.

PRINCIPLES OF BEHAVIOR

Members agree to always perform their activities and behave according to the highest ethical standards and to abide by the following guiding principles in their interactions within the Alliance. These principles are designed to improve the Alliance’s effectiveness and credibility.

OPENNESS AND TRANSPARENCY

Openness and transparency are essential in all aspects of the Alliance’s operation and communication. This means that the Members should share information in a timely and accurate manner.

SHARING IS CARING

The Members recognise that each of them has something to give to the Alliance and, by the same token, all of them have something to get back from it. They will share learnings and best practices.

COMMITMENT

As participants in the Alliance, all Members acknowledge that they have much to learn from each other and that there may be times when things do not go according to plan or to expectation. Flexibility and forbearance will be needed. All Members are expected to attend at least 1/4th of the scheduled meetings for that year, per year. All leadership is expected to attend at least 1/3rd of the scheduled meetings for that year, per year. We understand that we are caregivers for CDKL5 as well and life happens, so exceptions can be made based on the circumstances. But at the least an alternate representative should be sent to attend the meetings.

ORGANIZATION AND MANAGEMENT

Each country that signs the charter gets voting rights.

The leadership board has 7 members. Nominations are accepted for the leadership board members from among the Alliance members. From there, we vote and elect 7 board members, who get the highest votes. In case of a tie breaker, the board can have more members, to accommodate all the members. Example, if at the 7th position, there are two people who got the same number of votes, then both of them will be elected to the leadership board and instead of having 7 members, the board will now have 8 members.

The leadership votes for the Chair and the Secretary. In case of a tie, the Chairperson from the previous term determines the chair and secretary to break the tie. In absence of the chairperson or if the chairperson is a contestant for the next term, the secretary votes for the tie breaker. In case both the chairperson and secretary are in the tie breaker and both running the next term, a coin is flipped to decide the next chairperson/secretary.

The board, the chairperson and the secretary are elected for three (3) years.

No Chairperson or Secretary beyond two terms for the same position. However they can switch positions or still be part of the Leadership board.

The chairperson assigns a special seat on the board for a specific reason. Example during the Ukraine crisis, we invited Russian and Ukrainian representatives to be part of the leadership board.

The chairperson and secretary assign an advisor to the board. This person is someone who has long term knowledge and resources.

MEETING OF THE LEADERSHIP

The meeting frequency and duration is determined by the board within 15 days of the election of the new board.

Minutes shall be taken of the meetings of the Leadership Board and the Alliance. The Secretary will take care of drafting the minutes.

The leadership along with the input from the Alliance members need to determine one (1) long term 3-year goal and few short term goals (4-6 months).

NEW MEMBERS

Membership in the Alliance, in accordance with the Charter of the Alliance, is open to all States, Charities, Non-profits, Non-Governmental Organizations, Country Associations, Researchers (referred collectively as Member Organization or Members in this Charter) that accept the obligations contained in this Charter and, in the judgment of the Alliance, are able to carry out these obligations. Member Organizations are admitted to membership in the Alliance by a decision of the Leadership upon the recommendation of the Secretary.

Admission is (unless otherwise agreed by all Members) subject to the new Member’s unconditional agreement in writing to all the terms of the present charter and is also conditional upon the new Member having direct or indirect involvement with issues relating to the CDD.

Any charity, non profit, country association, research association can join the alliance as long as they are dedicated to CDKL5. There are no membership fees. However, abiding to this charter is the only requirement to be part of the Alliance.

Each Member that signs and abides with this charter gets voting privileges.  

FAMILY CONFERENCES

The board decides the location of the annual family conference. Usually, each year, the family conference is to be rotated globally in North America, EU, Asia, Pacific region (Australia/New Zealand/Fiji). New countries like Dubai (Middle East) and Japan should be encouraged to host. An attempt should be made to host a family conference in one new country every five (5) years.

In light of the post COVID-19 world and the hardships on families with CDKL5, it is mandatory to make arrangements for digital options as well.

No competition for sponsorship, doctors or researchers with the Global family conference. We understand that many members within a country may not be able to attend the global family conference outside of their country. In such a situation, the national organization is welcome to host a national family conference, at the same time as the global family conference where they live stream the global family conference and may have other activities. However, in the interest of the small community we have and to maintain unity, there should be no competition for sponsorship, doctors or researchers.

The Alliance is set up with the following aims:
● To improve growth of the global CDD community, building a stronger network among all the
existing and future National Family Associations.
● To help develop, and then support, an active network of CDD specialists in order to help share
knowledge and spread best practices, with the goal of making the region clinical trial ready.
● To support the goal of having all those living with CDD included in a national or international
registry, duly authorized by the proper national or international authorities, where possible.
● To identify opportunities for lobbying, in order to raise the scientific research, social, political and
medical awareness of CDD.

PRINCIPLES OF BEHAVIOR

Members agree to always perform their activities and behave according to the highest ethical standards
and to abide by the following guiding principles in their interactions within the Alliance. These principles
are designed to improve the Alliance’s effectiveness and credibility.

OPENNESS AND TRANSPARENCY

Openness and transparency are essential in all aspects of the Alliance’s operation and communication.
This means that the Members should share information in a timely and accurate manner.

SHARING IS CARING

The Members recognise that each of them has something to give to the Alliance and, by the same token,
all of them have something to get back from it. They will share learnings and best practices.

COMMITMENT

As participants in the Alliance, all Members acknowledge that they have much to learn from each other
and that there may be times when things do not go according to plan or to expectation. Flexibility and
forbearance will be needed. All Members are expected to attend at least 1/4th of the scheduled meetings
for that year, per year. All leadership is expected to attend at least 1/3rd of the scheduled meetings for
that year, per year. We understand that we are caregivers for CDKL5 as well and life happens, so
exceptions can be made based on the circumstances. But at the least an alternate representative should
be sent to attend the meetings.

ORGANIZATION AND MANAGEMENT

Each country that signs the charter gets voting rights.
The leadership board has 7 members. Nominations are accepted for the leadership board members from
among the Alliance members. From there, we vote and elect 7 board members, who get the highest
votes. In case of a tie breaker, the board can have more members, to accommodate all the members.
Example, if at the 7th position, there are two people who got the same number of votes, then both of them
will be elected to the leadership board and instead of having 7 members, the board will now have 8
members.

The leadership votes for the Chair and the Secretary. In case of a tie, the Chairperson from the previous
term determines the chair and secretary to break the tie. In absence of the chairperson or if the
chairperson is a contestant for the next term, the secretary votes for the tie breaker. In case both the
chairperson and secretary are in the tie breaker and both running the next term, a coin is flipped to decide
the next chairperson/secretary.

The board, the chairperson and the secretary are elected for three (3) years.
No Chairperson or Secretary beyond two terms for the same position. However they can switch positions
or still be part of the Leadership board.

The chairperson assigns a special seat on the board for a specific reason. Example during the Ukraine
crisis, we invited Russian and Ukrainian representatives to be part of the leadership board.
The chairperson and secretary assign an advisor to the board. This person is someone who has long
term knowledge and resources.

MEETING OF THE LEADERSHIP

The meeting frequency and duration is determined by the board within 15 days of the election of the new
board.
Minutes shall be taken of the meetings of the Leadership Board and the Alliance. The Secretary will take
care of drafting the minutes.
The leadership along with the input from the Alliance members need to determine one (1) long term
3-year goal and few short term goals (4-6 months).

NEW MEMBERS

Membership in the Alliance, in accordance with the Charter of the Alliance, is open to all States, Charities,
Non-profits, Non-Governmental Organizations, Country Associations, Researchers (referred collectively
as Member Organization or Members in this Charter) that accept the obligations contained in this Charter
and, in the judgment of the Alliance, are able to carry out these obligations. Member Organizations are
admitted to membership in the Alliance by a decision of the Leadership upon the recommendation of the
Secretary.
Admission is (unless otherwise agreed by all Members) subject to the new Member’s unconditional
agreement in writing to all the terms of the present charter and is also conditional upon the new Member
having direct or indirect involvement with issues relating to the CDD.
Any charity, non profit, country association, research association can join the alliance as long as they are
dedicated to CDKL5. There are no membership fees. However, abiding to this charter is the only
requirement to be part of the Alliance.
Each Member that signs and abides with this charter gets voting privileges.
FAMILY CONFERENCES
The board decides the location of the annual family conference. Usually, each year, the family conference
is to be rotated globally in North America, EU, Asia, Pacific region (Australia/New Zealand/Fiji). New
countries like Dubai (Middle East) and Japan should be encouraged to host. An attempt should be made
to host a family conference in one new country every five (5) years.
In light of the post COVID-19 world and the hardships on families with CDKL5, it is mandatory to make
arrangements for digital options as well.
No competition for sponsorship, doctors or researchers with the Global family conference. We understand
that many members within a country may not be able to attend the global family conference outside of
their country. In such a situation, the national organization is welcome to host a national family
conference, at the same time as the global family conference where they live stream the global family
conference and may have other activities. However, in the interest of the small community we have and to
maintain unity, there should be no competition for sponsorship, doctors or researchers.