Due to the nature of several genetic disorders, even small to medium sized organizations may find it necessary to operate on the international level. Legal and logistical procedures abound during this process, and it is the intention of this page to establish means of navigating through it. Various locations have separate rules about qualifications for non-profit agencies, and there are guidelines for international organizations.
Instead of creating official International Offices, some groups have decided to call them International Chapters. Check out this section.
Guidelines by Location
In order for U.S.-based organizations to give tax-exempt status to Canadian donors, a Canadian charity must be established. Those who have gone through the process share that the criteria is very strict to become a Canadian Charity, but it is well worth the effort. The website of the Canadian Revenue Agency is where you must begin. This website also offers some information.
Some organizations for very rare genetic disorders have an ever growing group of international members, which is great to help support those all over the world who don't have the resources locally. These organizations want to promote international dues paying members, but sometimes its hard to provide the same member benefits for international members, such as serving on a board of the group. While it's great to have diverse leadership and nobody wants to discriminate against any member due to geographical location, there are certain constraints that can prevent daily business functioning such as time zone differences. This is how some groups deal with this issue:
- Being a support group for a rare disease, we have always had members from all over North America, some in Central and South America, and a few from countries all over the world. Our group has always had two ‘tiers’ of membership, Active and Associate [Active is essentially patients, their parents, grandparents, and spouses, and professionals who treat our patients; Associate is all others, and those who join after the annual membership deadline]; the Active members pay $5.00 more, and have voting and office-holding rights. Last year, a member expressed his desire to run for our Board – he lives in the Middle East – but because he was only an associate member, he was in eligible. We did not face any similar issues with the most recent election candidates, and the Board did not adjust any policies as of yet. Our past President lives in Canada, and although most of our organization’s day to day functioning is done in the upper Midwest of the U.S., having the President in Canada caused several real problems – especially with mail turnaround time. Getting checks signed in order to pay bills in a timely manner was a challenge. We ended up using the U.S.-based Vice President as a second signature on many checks.
- We have been considering this issue for many years and did not find yet the right way to set up chapters in other countries. We are in France and Cutis Laxa Internationale is the only support group for Cutis Laxa worldwide. There are several families in the USA and we thought about setting up a chapter there.The only points we went through with are :
- Each chapter must be registered as non-profit in its country
- You cannot deliver a tax receipt to be used in another country
- Barth Syndrome International