International Contacts/Support Groups
The world is no longer divided with big barriers between countries. The Internet provides for all of us access to the whole world—for advocacy organizations this is both exciting and frustrating. It is exciting because we cross borders and hold hands with others experiencing the same things we are experiencing. It is frustrating because we want to make the access easy and effortless. But different laws, languages, currencies and economies create difficulties in providing equal access.
One group is exploring the option of hosting support groups in hospitals, much like they do here in the United States. Advocates on MemberForum shared that occasionally they reimburse their international volunteers for expenses incurred in hosting (i.e. refreshments, postage, etc.). They ask for invoices or receipts like here in the USA, and the volunteers send them and then are paid usually through PayPal or wire. International hospitals all over the world have been very collaborative in this effort and are often enthusiastic! Even though it can be logistically difficult (distance, postage, language etc) we are totally convinced that offering services to patients with our syndrome in any other country is well worth the effort.
In places where we have a relatively large group of patients and families (for our syndrome, relatively large means about ten people!), we try to hold small support meetings. This is quite expensive, so we cannot do it very often, but we have held small regional meetings. We try to encourage establishment of “affiliates”, that can operate more easily and efficiently in their own countries. These organizations are associated in a collaborative way with us, sharing information and materials, but are independent entities with their own Boards.
Pen and Email Pals
Often individuals affected by genetic conditions, particularly rare ones, are few and far between. This can make it particularly difficult for them to find general sources for support and friendly interaction that involve a real understanding of their condition—it's the basis for the need for support and advocacy organizations in general. "Just to know one other person with this disease would make all the difference in the world!"
Pen pals have always been a great way for people in various parts of the globe to communicate, and in this electronic age, email pals can sometimes be a great way to connect individuals as well. The keys to making pen and email pal programs work are twofold: making it easy for pals to find each other, and making it easy for them to communicate.
You can ask individuals who are registering for your organization to indicate if they would like to be contacted as part of a "pals" program. You can then connect the people who chose to participate—sometimes via email (if they have given an email address), and also through the postal mail, if they give permission on their entry form.
You can also advertise a new pen and email pal program in your newsletter or on your website. If you distribute a paper newsletter, you may wish to include postal or email addresses from individuals who have given permission for this use in advance. However, it is wise not to publish this information in Web-based newsletters, although a password-protected members-only section of your site might be a good place.
Pals who correspond via email will generally find it easy to stay in touch—sometimes too easy! —but people who choose to correspond through postal mail may benefit from some extra help. One tip to suggest to your pen pal participants is including a self-addressed, stamped envelope with their mail to each other. It still divides up responsibility for postage, but can make it a little easier to get that reply out. Pals in the United States can purchase "International Reply Coupons" at the US Postal Service to include with envelopes to overseas pals.
More information about International Reply Coupons can be found at the USPS website.
Phone Support Groups
Because those needing support for a particular condition can be so geographically distant, remote support groups may become a helpful and viable tool. They have been utilized successfully by multiple groups in the US for both general discussion, and for specific predesignated topics affecting their membership. Having a few running groups for different topics or sets of individuals (i.e. parent of child, adults, etc.) is popular. Spiderphone is a recommended communication service for this purpose, because the sessions can be recorded and are then posted for the members on a password protected site.
Interactive ways to show where people are
As it becomes easier and easier for people to connect from wherever they are, sometimes a visual of where individuals are located can be helpful (and fun)! Check out www.aefsupport.org/map for one option (free, although this group opted for the $38 ad-free version). Google also allows you to create one: https://www.pxe.org/about-pxe-international/where-world-pxeers is an example.
Refraining from putting member contact information on your website is partly a privacy issue and partly a simple logistics issue. You typically want your website to have the broadest possible accessibility, and while you want users of the site to be able to contact you, some visitors may come for other reasons—collecting email addresses for commercial purposes, for example—and you should protect your members from this kind of access.
Some of your members may wish to maintain a degree of privacy in postal mail interactions as well. In this case, you can set up a "forwarding" system, in which pals send their letters to your office with some identifier of the recipient—name and a "PO Box" number (in the event that you have more than one member with the same name, or as a way to allow individuals to use first names only). This type of protection requires some additional work and cost, but it may provide that extra layer of reassurance for some members.
- Autopsies and Tissue Collection
- Best Practices
- Conferences, Workshops, and Meetings for Affected Individuals
- Dealing with Death
- Internet Services
- Phone Services
- Protecting Member Privacy
- Setting Up A National Conference
- Support for Individuals and Families
- Youth to Adult Transition Issues