International Coalition of Organizations Supporting Endocrine Patients
Global Division of The MAGIC Foundation, USA
NAME I.C.O.S.E.P.- International Coalition of Organizations Supporting Endocrine Patients Supported and sponsored by the international division of The MAGIC Foundation for children’s growth.
WHO WE ARE- International Coalition of Organizations Supporting Endocrine Patients (ICOSEP) is a volunteer network of medical professional and patient organizations which assist endocrine patients (children and subsequently adults) throughout the world.
THE IMPORTANCE OF GROWTH AWARENESS AND ICOSEP. According to our research, there are hundreds or thousands of medical conditions which impact a child’s growth. Left undiagnosed or untreated…children suffer potentially for their entire life. Unfortunately, some children do not survive at all. Many of the medical conditions impacting a child’s growth are treatable. Lives can be saved or at the very least greatly improved if diagnosis is timely and treatments are available. The key to success for these children is education and awareness. Growth is NOT cosmetic- it is simply a visual indicator of a child’s health!
ICOSEP fosters an international networking system to enhance the early identification and treatment of affected children thus improving their lives as children and later as adults. Many, if not most of the medical conditions which impact a child’s healthy growth are labeled as “rare”. Therefore, it is essential that those of us throughout the world whose children are affected by these medical conditions in addition to those who treat these children, join together to develop a united platform. We must educate the world!
ICOSEP is committed to strengthening our voice and message globally. Developing an “ordinary people’s” network by which families and medical professionals can quickly access both medical information and support is the key for change.
Members groups are listed online. Groups share information, physician resources, program ideas and other helpful strategies which educate the public and support the organizations serving patients worldwide. No donations, fees or dues are charged to groups for membership of ICOSEP.
Article 1- Name and Location
1.1 Name: The name of The MAGIC Foundation’s international division shall be the International Coalition of Organizations Supporting Endocrine Patients (ICOSEP).
1.2 Location: The Chief Executive Director of ICOSEP shall hold ICOSEP records.
Article II- Incorporation
2.1 The incorporation of the ICOSEP is that of the host charity, The MAGIC Foundation.
Article III- Purpose
3.1 ICOSEP works together to:
- improve access to medical information and advancements
- increase knowledge of services available for affected children and/or adults
- raise awareness regarding the importance of monitoring children’s linear growth
- share successful strategies for programs established to care/support/treat GD patients
- build a united voice for rare growth disorders worldwide.
3.2 ICOSEP is a division of The MAGIC Foundation, USA, a nonprofit charitable organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s linear growth. Since its inception MAGIC has grown to include support services for adults who were also impacted by these medical challenges.
3.3 The MAGIC Foundation’s commitment and vision is to reduce the emotional and physical trauma caused by growth disorders, resulting in healthier, happier children and consequently, adults.
3.4 The MAGIC Foundation Motto: Children have a short time to grow and a lifetime to live with the results.©
Article IV- Membership of ICOSEP
4.1 Types of Membership
Formal Memberships Include: Nonprofit, patient based organizations, societies and informal online patient/family support groups
Affiliate Memberships Include: Medical Organizations, Societies and other medical professional groups.
No fees or dues are required for membership.
4.3 Membership Process
- ICOSEP is constituted by a voluntary collaboration of organizations who agree to the coalitions common goal of global education.
- Application of membership for an individual instead of a developed organization or formal Society must be by application to the Director.
- Applications for membership will be determined by ICOSEP Director.
4.4 Benefits of Membership
- Global voices which are rarely heard due to the “rare” nature of growth conditions join forces to establish a collective voice and collective strength enhancing the legitimate need for services to these patients.
- Networking for new or smaller groups-affords the sharing of ideas with the click of a button online. Receive and give support from peers dealing with challenges that are inherent to medical professionals or support organizations.
- Share successful strategies on how to support local families
Access to updated medical resources.
- Gives access to valuable knowledge, networks and resources to improve worldwide advocacy and global understanding/awareness of growth disorders.
- Membership gives groups an opportunity to reach out to an international network of organizations, societies and professionals, volunteers and individuals with similar commitments.
- Electronic access to other groups, strategies, medical data and support instantly.
- Comprehensive database which includes a member directory.
- Electronic Newsletters twice annually.
- Access to The MAGIC Foundation’s Friday Email with medical updates on numerous conditions sent to members weekly. (Limited to one per organization)
- Joining the coalition increases the chances for improved organizational success.
- Networking Resources.
4.5 Grounds for the Expulsion of a Member Society or Organization
- A member society or organization may be proposed for expulsion upon non-participation for a period of 12 months.
- A member shall leave the ICOSEP upon cancellation of membership.
- A member society may be expelled by a two thirds majority vote of the Advisory Board for actions which are in direct conflict with the goal and directives of ICOSEP, illegal activities, actions taken to financially benefit one organization which is to the detriment of others, or for causing conflict within the ICOSEP.
Article V- Funding of ICOSEP
5.1 The projects taken on by ICOSEP shall be funded through donations from foundations, benefactors and grants. An annual fee of $175 per organization adapting “MAGIC” as their host name (from the unique country to ICOSEP annually) shall be used for funding ICOSEP projects and services.
5.2 The organizations doing work on behalf of the coalition, shall work for the benefit of the entire coalition and not abuse the ICOSEP membership to pursue its own commercial aims.
5.3 The activities of ICOSEP shall not serve to commercially promote donors or specific medical professionals.
5.4 The ICOSEP funds shall only be used for the purposes defined in this Constitution.
5.5 No person shall be allowed to benefit from expenditure that is incompatible with theÂ purpose of the ICOSEP or from inappropriately high remuneration.
5.6 All funds raised for or donated to ICOSEP shall be reported to the ICOSEP Director. Transference of funds should be electronic via the ICOSEP donations webpage.
5.7 Funding specifically for ICOSEP is supported via The MAGIC Foundation Global Division.
Article VI- Chief Executive Officer
6.1 Designation of the CEO
- As the financially responsible party, The MAGIC Foundation is responsible for assigning staff. The Chief Executive Officer (CEO) shall carry out the activities and policies to ensure positive and ethical programs and accountability.
- The CEO is responsible for budget and coalition activity reports to The MAGIC Foundation.
- The CEO will have specific goals that are recommended by theÂ ICOSEP Advisory Board.
- A CEO will be considered for termination upon determination ofÂ actions contrary to the goals and objectives of ICOSEP and a majority of vote of the Board of The MAGIC Foundation.
6.2 Actions of the Advisory Board of ICOSEP
Shall elect a President and Secretary.
Article VII- Advisory Board
7.1 Election of ICOSEP Advisory Board Members
The right to participate and vote in the ICOSEP Advisory Board shall only be held by official member organization representatives and societies. The ICOSEP Advisory Board shall be considered a working group with a maximum total of 15 members, ICOSEP Advisory members shall be elected from nominees from the organizations and societies by ballot of the member societies.
7.2 Terms ofÂ ICOSEP Advisory Board Membership
Each person representing a legally registered organization or society which has been granted membership and voted on to the ICOSEP Advisory Board may volunteer to serve a maximum term of 2 years on the ICOSEP Advisory Board with no President serving more than 2 consecutive terms.
The term of service of any/allÂ Board member may not exceed 2Â consecutive terms nor a total of 6 years.
The ICOSEP President, in consultation with the ICOSEP CEO, shall direct activities of theÂ organization in accord with policies agreed uponÂ and theÂ ICOSEP Constitution.
Article VIII- Committees of ICOSEP
8.1 The ICOSEP Advisory Board shall constitute committees to take action and bring forth ICOSEP business.
8.2 The President or CEO will propose committees to meet the goals, need and design of ICOSEP.
Article IX- ICOSEP Meetings
9.1 Yearly meetings. The organization shall hold its regular business meeting of the ICOSEP Advisory Board members each year for the transaction of legal and scientific matters at a time of convenience for the members. This meeting shall be electronic unless funds are available via grants for an in person meeting.
9.2 Interim meetings. Other interim meetings shall be held at the discretion of the ICOSEPÂ Board of DirectorsÂ .
9.3 Recording of meetings. Minutes shall be the responsibility of the Secretary and must be signed by the President within 30 days of all meetings. Copies of the minutes shall be emailed by the Secretary to the Executive Director for forwarding to the management of The MAGIC Foundation and any committee members who were unable to attend the meeting. Minutes shall be made available to any member of ICOSEP upon request.
Article X- Dissolution of the ICOSEP
10.1 ICOSEP may be dissolved by a three-quarters vote by the ICOSEP Advisory Board or the management of the ICOSEP parent organization, The MAGIC Foundation.
10.2 In the event of a dissolution, any or all assets designated for the ICOSEP shall be reverted to the operations of TheÂ MAGIC Foundation general fund.