Worldwide Society of
Wolfram Syndrome Families
If affected by WS, individually or as a family, or if you are a MD with patients who are affected with WS, or involved in WS research you are invited to join our worldwide society. Membership is intended to be at no cost. However, there may be expenses incurred from time to time that may be requested for reimbursement by voluntary contribution. At present this organization totally informal and is not a registered tax deductible charitable institution.
We request that those who join our group are over 18 years old. We consider it a parental responsibility to advise children on the nature and condition of Wolfram Syndrome.
Prior to joining please review the conditions of our bylaws. Just for the complete understanding of everyone involved.
To join this small society please send an e-mail to the WSWSF webmaster. Please include enough information about your experience with WS so that we can determine appropriately that you are not a curiosity seeker. We will share information about our experiences with WS in return. You are not buying your way into our restricted area, you are simply being permitted on a need to know basis. If you are a physician or researcher please indicate where you are practicing and conducting your work.
Unfortunately, there are unscrupulous people who use the internet for their entertainment. We hope to restrict such users from accessing our more private information.
You will receive a return e-mail with the URL address that will permit access into the other pages of this web site. Please allow a few days for this response. Life is busy for everyone.
Those who are directly involved with WS are encouraged to participate., On subsequent pages the names of those affected have been deleted or encoded in order to protect the privacy of those individuals. Members of the society may choose to reveal their names to others as they so desire via direct e-mail.
We do not intend to permit access to our private information pages to anyone who is not affected by or involved in WS research or clinical care. Our condition is serious enough that we do not need ridicule by the casual observer or the public in general. If you think you may have need to the additional information on our private pages, please write us and we will consider your request on a case by case basis.
Information presently posted on the private pages include:
- Frequently Asked Questions about Wolfram Syndrome - answered by a WS family.
- Doctors who are presently conducting research on or actively treating Wolfram Syndrome Patients
- Family profiles - each family is invited to post a page where in they describe their experience and how they have dealt with the disease. This includes family pictures.
- Bylaws of our society (also available from the public side of the web site)
- Links to other sites (also available from the public side of the web site)
- Helpful Hints - practical non medical suggestions that may serve useful to others affected by Wolfram Syndrome.
- WSWSF Newsletters - collected information and news of our group members are occasionally posted.
The real value in joining the WSWSF is not in having access to the web site. The value is found in having others who are going through or have gone through the same experiences you are having. It can be ever so comforting to find someone who truly understands the dilemma that you face. When you join the WSWSF your e-mail address will be shared with the other members of the society. Should they elect to correspond with you, they will. There is no requirement for anyone to contribute or participate if they have no desire to do so. Those who do participate generally find the greatest benefit. This disease is a long term gradually progressive degenerative illness lasting several decades. There are few physicians who know the disease and precious few people who truly understand what you are going through. This is a mutual support group. There are no professional counselors, just understanding hearts who are going or have been through the same experience you are. You will learn of their trials as you share yours.