Frequently Asked Questions

Q. Is GOLD a membership organisation?
Q. Can individuals be members of GOLD?
Q. Is it true that there are two different ‘classes’ of members of GOLD?
Q. I would like to join GOLD but I don’t belong to an ‘organisation’. What should I do?
Q. We fit the criteria described in the articles of association for joining but we’re not a legally established, free-standing organisation. Can we join?
Q. Do I have to have approval from my supervisor or my board of directors to join GOLD?
Q. More than one part of my university or medical centre wishes to join GOLD. Is that a problem?
Q. Do I have to tell anyone in another part of my university that I intend to join GOLD?
Q. The application asks if patients are a part of our organisation. Why is this of interest to GOLD?
Q. If I don’t become a member, can I participate in GOLD activities?
Q. Where do I send my membership application?
Q. Who reviews membership applications?
Q. What does GOLD membership entail?
Q. What responsibilities do I have as our group’s representative to GOLD?
Q. Will we have to pay membership dues?

General

Q. Is GOLD a membership organisation?

A. Yes, GOLD is a membership organisation. According to the articles of incorporation, GOLD’s members are any organisations that share a commitment to increased research, treatment and care for individuals living with these rare disorders. In the context of GOLD, ‘an organisation’ can be a voluntary organization, a research laboratory, research group or institute, or a clinical group. The important aspect that qualifies the organisation for membership is a legitimate interest in lysosomal storage diseases.

Membership

Q. Can individuals be members of GOLD?

A. No. Only organisations can join GOLD. This is for two important reasons:

Efficiency. GOLD’s administration is not equipped to handle the level of reporting and service required by potentially thousands of individual members around the world.
Impact. GOLD strives to optimise its impact by speaking and acting on behalf of reputable organisations.

Q. Is it true that there are two different ‘classes’ of members of GOLD?

A. Yes. There are two different classes of GOLD members: not-for-profit members and commercial members. Not-for-profit members include voluntary organizations, clinical and laboratory-based research groups and university departments. This is explained in the Articles of Association:

Each applicant for Not For Membership shall satisfy the Management Council* by providing such evidence as the Council shall require that the [applicant] Organisation is recognized by the fiscal authorities in its country of residence as a charity or a not for profit organisation or co-operative having objectives which are similar to or complementary to the objectives of [GOLD.]

Note: The ‘Management Council’ fills the same role as a ‘board of directors’.

Q. I would like to join GOLD but I don’t belong to an ‘organisation’. What should I do?

A. GOLD welcomes your involvement and the involvement of any group of two or more individuals who share a commitment to its programs. The memorandum of incorporation is designed to encourage the broadest participation possible. For example, any section of a larger organisation is eligible for GOLD membership. For example, a lysosomal storage disease laboratory, no matter what its size, in a university department is welcome to join. A patient support group, no matter what its size, is also welcome. Any organisation, provided it has a legitimate interest in lysosomal diseases, is a potential member of GOLD. The goal of our membership drive is to engage all groups of individuals willing to help GOLD succeed.

Q. We fit the criteria described in the articles of association for joining but we’re not a legally established, free-standing organisation. Can we join?

A. Yes, you are welcome as a GOLD member. GOLD does not require that its members be legal entities. If you’re interested in joining, please do so.

Q. Do I have to have approval from my supervisor or my board of directors to join GOLD?

A. You are in the best position to determine what approvals your membership application requires. GOLD welcomes applications from all interested parties. We assume that you have secured the proper approvals if any are needed from your perspective.

Q. More than one part of my university or medical centre wishes to join GOLD. Is that a problem?

A. No. More than one part of a university or medical centre may join GOLD but not individual members of the laboratory. If two different principal investigators at one university, for example, each led a different laboratory, each laboratory is encouraged to join GOLD. Our goal is to represent all those engaged in this field.

Q. Do I have to tell anyone in another part of my university that I intend to join GOLD?

A. GOLD does not require approval from anyone in another part of your university for you to join. You will know how best to deal with your own internal procedures and politics, however.

Q. The application asks if patients are a part of our organisation. Why is this of interest to GOLD?

A. It helps to ensure that we don’t miss out groups that work with patients but where it may not be obvious from the name, when we are doing patient-oriented mailings etc

Q. If I don’t become a member, can I participate in GOLD activities?

A. No. Only GOLD members enjoy the benefits of membership, including the right to vote in elections.

Q. Where do I send my membership application?

A. Please complete and return your application to the address on the form, or email Ann.hale@goldinfo.org

Q. Who reviews membership applications?

A. Applications for membership will be reviewed monthly by the GOLD Management Council and applicants will be notified promptly on whether their application has been approved.

Membership responsibilities

Q. What does GOLD membership entail?

A. By joining GOLD, you will have the right to nominate yourself and others for service on the Management Council (board of directors). In addition, you or another member of your group will have the right to vote in GOLD elections: one vote per group. You will also be able to volunteer for service on various task forces and committees.

Q. What responsibilities do I have as our group’s representative to GOLD?

A. Another important part of GOLD membership is updating your colleagues. Because GOLD can not mail updates to every individual with an interest in the subject, you will be asked to post GOLD updates on your group’s bulletin boards, intranets, etc. – anything that spreads the word about our progress.

Q. Will we have to pay membership dues?

A. Membership is free of charge at present. This will reviewed once the Management Council has been elected, however. Membership dues are expected to be minimal, however. GOLD intends to use the support it receives from the pharmaceutical industry, foundations and other donors to support its activities, rather than rely on its members for its operating budget.

 

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