This area contains our Legal Disclaimer, Policy for Collaboration and Ethics, Link Policy and Constitution. Scroll to the highlighted area you seek.

Legal Disclaimer

The information provided by ICOSEP is provided by the international division of The MAGIC Foundation, referred to from this point on as ICOSEP (International Coalition of Organizations Supporting Endocrine Patients). Information on all videos, website and other materials is for general informational purposes only. All information on our sites and materials is provided in good faith. We make no representation or warranty of any kind, express or implied, regarding the accuracy, adequacy, validity, reliability, availability or completeness of any information provided on or within the materials.

Under no circumstance shall we have any liability to you, your family or association for any loss or damage of any kind incurred as a result of the use of the site or reliance on any information provided on the site. Your use of the site or your reliance on any information on the site is solely at your own risk.

All information provided via our materials may contain links to other websites or content belonging to or originating from third parties or links to websites and features in banners or other advertising. Such external links are not investigated, monitored, or checked for accuracy, adequacy, validity, reliability, availability or completeness by us.

We do not warrant, endorse, guarantee, or assume responsibility for the accuracy or reliability of any information offered by third-party websites linked through the site or any website or feature linked in any banner or other advertising. We will not be a party to or in any way be responsible for monitoring any transaction between you and third-party providers of products or services.

Our materials and sites offer general informational for educational purposes only and is not a substitute for professional advice.

Accordingly, before taking action based upon such information, we strongly encourage you to consult with your medical professionals. The use or reliance of any information contained on this site or any of our materials is solely at your own risk.

Some of our materials may contain testimonials by parents of affected children, medical professionals or others interested in the real-life experiences of growth impacted children. However, the experiences are personal to those particular users, and may not necessarily be representative of all our members or advisors. We do not claim, and you should not assume, that all users will have the same experiences. Individual results may vary.

The views and opinions contained in the testimonials belong solely to the individual user and do not necessarily reflect our views and opinions. Those people who provide testimonials are not paid or otherwise compensated by us for their testimonials.

The testimonials on any or all of our materials are not intended, nor should they be construed, as claims to specific products and/or services can be used to diagnose, treat, mitigate, cure, prevent or otherwise be used for any disease or medical condition.

You are welcome to share a link to our resources with appropriate credit to our organization. Inquiries or communications should be sent to contactus@icosep.org.
Thank you.

Policy for Organizational Collaboration and Ethics

The International Coalition of Organizations Supporting Endocrine Patients referred to from hereon as ICOSEP, is the international division of the legally registered non-profit charitable organization named The MAGIC Foundation (MAGIC).

Integrity and Transparency

ICOSEP aims to be transparent in all collaborations both corporate and individual. Collaborations shall be explicit and transparent about the nature of the relationship. No funding shall be accepted which is contingent upon actions by ICOSEP or its members. Only general support which is governed by ICOSEP as to the use of such funds shall be accepted.

MAGIC doing business as ICOSEP accepts grants and sponsorships from all types of personal and business supporters. ICOSEP accepts support from pharmaceutical companies who have a product related to care of people affected by endocrine medical conditions.

In working with supporters, ICOSEP shall maintain independence and ethical integrity at all times:

  • Before accepting funds, ICOSEP will obtain assurances that the company or supporter complies with global ethical standards relating to working with patient groups. ICOSEP is NOT an organization for hire or influence of for profit entities of any sort.
  • Collaborations must clearly support the aims and objectives of ICOSEP.
  • ICOSEP will never give one company a competitive advantage over another and shall seek sponsorships from multiple sources.
  • Representatives of ICOSEP are not permitted to accept personal payments from any company.
  • MAGIC can accept honoraria and reimbursement of expenses for staff projects if in line with this policy.

Conflicts of Interest

ICOSEP’s endeavors to establish successful collaborative partnerships with mutual respect and transparency of benefits. When establishing a new partnership, all parties should work to reduce possible conflicts of interest.

To help identify and manage potential conflicts of interest ICOSEP shall:

  • give no warranty that a collaboration will not contain any material that could be disadvantageous to other partners or supporters.
  • not give permissions to partners or sponsors to imply benefits for a medical product through an association with the charity or member organization.
  • be transparent about collaborations with organizations.
  • never provide specific name access to its partners and members to third parties other than the public records / access listed on our website.

Note: No sponsor nor member organization shall have control over analysis, conclusions, positions or recommendations by ICOSEP.

Collaboration

  • ICOSEP is vigilant and careful when building partnerships, networks and collaborating with other organizations. The independence of ICOSEP as a legal entity, separate from any/all member organizations, sponsors and supporters is paramount.  ICOSEP is not led by money or other profitable gains which are not beneficial programs to those living with endocrine health conditions.
  • ICOSEP’s collaborations are intended to influence public awareness change, medical understanding of endocrine health issues and generate a shared global support for those afflicted. It is essential that all partners and supporters, both organizations and individuals, respect the expertise, skills, goodwill and knowledge shared for this unique patient population above any financial benefits.
  • ICOSEP will not promote or endorse products or services from supporters, partners or third parties to our members and contacts through email.

Shared Goals

ICOSEP welcomes collaborators whose goals, values and actions promote and/or enable good endocrine health.

Obligations of Supporters and Partners

  • Partner organizations and supporters agree to share the Children’s Growth Awareness message on 20 September annually. A copy of all the messaging regarding Children’s Growth Awareness shall be sent to ICOSEP no later than 15 October of that same year.
  • At no time can ICOSEP’s logo (including the Children’s Growth Awareness logo) be used without written permission prior to any occasion it is used.
  • ICOSEP shall be advised if its name or its project names (Children’s Growth Awareness Campaign or Children’s Growth Awareness Educational Initiative) are used for awareness communications. Approval must be sought for any non-public or otherwise materials not provided by ICOSEP which refers to a Children’s Growth Awareness project.
  • In the event of an issue which could adversely affect ICOSEP, a supporter or partner organization, all parties agree to report potential problems to ICOSEP immediately. ICOSEP reserves the right to take appropriate action as needed to ensure its reputation is not adversely affected.
  • Organizations agree to commit to confidentiality of any communications or materials as requested in writing by either party.

Link Policy

Submitting your organizations’ link to ICOSEP acknowledges that:

1. You are legally authorized to submit information on behalf of the organization you are representing and submitting
2. You are giving permission to ICOSEP to link to your organization’s website.
3. You guarantee a reciprocal link to ICOSEP website.

Links will be considered for organizations which meet the following criteria:
-Expressly support the good and true interests for qualified professional medical attention and/or information for endocrine patients.
-Companies/organizations/foundations which have existed for more than 3 years.
-Do not directly promote or solicit products which do not expressly support the ICOSEP Constitution.
-Provide online reciprocal link with no fee nor liability to ICOSEP.

After meeting the above criteria, and following the written authorization (via U.S.Mail or email), a Limited License for Website Link will be authorized as a nonexclusive, non transferable, revocable link right to use the graphic image and text described above, solely for the purpose of linking our site (www. icosep.org and any of ICOSEP’s website pages, with the exception of Resource Link or members only pages) to your Site. The link may only be used to transport a user from your site directly to an authorized page within the ICOSEP site. By signing the request for Link Agreement you agree not to mirror any part of our site, redirect the link specifically with advertisement, nor frame segments of our pages within your site structure. You shall not copy nor use any personal stories, photographs, nor information used in the members only section for purposes other than an informational link. You shall not use nor alter our name, trademark or copy written information without specific signed authorization. You will not use the ICOSEP or The MAGIC Foundation name or materials in any way that would slander, demean, defame, or cause any harm to us, the families we serve or those who represent ICOSEP or The MAGIC Foundation. You understand that we may revoke your license at our choice by giving you written notice in hard copy or electronic form to the name and address that you provided us.

Under no circumstances will one party have any obligation nor liability to the other party for any damages incurred by such other party, whether, indirect, incidental, punitive, consequential, special or other damages, including without limitation, damages for loss of business, loss of profits, loss of goodwill, work stoppage, computer or computer system failure or malfunction, loss of work product or any other commercial damages or losses, whether directly or indirectly caused, whether in tort, contract or otherwise, even if the party is advised of the possibility of such damages.

You shall indemnify and hold the The MAGIC Foundation, and ICOSEP, its directors, member organizations, officers, volunteers, other representatives and employees harmless, from any claims, liability, judgments, damages or costs, including reasonable attorneys’ fees, asserted or awarded against or incurred by the other party, as a result of any negligent act, omission, or error.

The Agreement will begin immediately upon your notification of authorization of your International Networking. This agreement can be terminated by either party without explanation. Upon termination, you will immediately remove the link to any part of the ICOSEP site from your site. Failure to comply with this notice, is just cause for The MAGIC Foundation dba ICOSEP to bill you personally and your business/organization/foundation the amount of ten dollars per day for the use of our website, until the link(s) are terminated.

USE OF MATERIALS OR INFORMATION ON THIS WEBSITE

The information provided by the international division of The MAGIC Foundation referred to from this point on as ICOSEP (International Coalition of Organizations Supporting Endocrine Patients) on our videos, website and all other materials is for general informational purposes only. All information on our sites and materials is provided in good faith, however we make no representation or warranty of any kind, express or implied, regarding the accuracy, adequacy, validity, reliability, availability or completeness of any information provided on or within the materials.

Under no circumstance shall we have any liability to you for any loss or damage of any kind incurred as a result of the use of the site or reliance on any information provided on the site. Your use of the site or your reliance on any information on the site is solely at your own risk.

All information provided via our materials may contain links to other websites or content belonging to or originating from third parties or links to websites and features in banners or other advertising. Such external links are not investigated, monitored, or checked for accuracy, adequacy, validity, reliability, availability or completeness by us.

We do not warrant, endorse, guarantee, or assume responsibility for the accuracy or reliability of any information offered by third-party websites linked through the site or any website or feature linked in any banner or other advertising. We will not be a party to or in any way be responsible for monitoring any transaction between you and third-party providers of products or services.

Our materials and sites offer general informational for educational purposes only and is not a substitute for professional advice.

Accordingly, before taking action based upon such information, we strongly encourage you to consult with your medical professionals. The use or reliance of any information contained on this site or any of our materials is solely at your own risk.

Some of our materials may contain testimonials by parents of affected children, medical professionals or others interested in the real-life experiences of growth impacted children. However, the experiences are personal to those particular users, and may not necessarily be representative of all our members or advisers. We do not claim, and you should not assume, that all users will have the same experiences. Individual results may vary.

The views and opinions contained in the testimonials belong solely to the individual user and do not necessarily reflect our views and opinions. Those people who provide testimonials are not paid or otherwise compensated by us for their testimonials.

The testimonials on any or all of our materials are not intended, nor should they be construed, as claims to specific products and/or services can be used to diagnose, treat, mitigate, cure, prevent or otherwise be used for any disease or medical condition.

Constitution
International Coalition of Organizations Supporting Endocrine Patients

I.C.O.S.E.P.

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.

CONSTITUTION

Article 1- Name and Location

1.1 Name: The name of The MAGIC Foundation’s international division shall be known as 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 legal incorporation of ICOSEP is that of the host charity, The MAGIC Foundation.

Article III- Purpose

3.1 ICOSEP works globally to:

  • improve access to medical information and advancements for children and/adults with medical conditions impacting their growth
  • 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.

4.2 Dues

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 the 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 web page.

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 the ICOSEP Advisory Board.
  • A CEO will be considered for termination upon determination of 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 of 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/all Board member may not exceed 2 consecutive terms nor a total of 6 years.
The ICOSEP President, in consultation with the ICOSEP CEO, shall direct activities of the organization in accord with policies agreed upon and the 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 ICOSEP Board of Directors .

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 The MAGIC Foundation general fund.

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