Connecting Individuals
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[edit] International Contacts
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.
[edit] 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.
[edit] Privacy Note
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.
