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Atypical HUS Foundation Conference - Seattle, Washington
Fri, May 5, 2017, 6:00 PM – Sun, May 7, 2017, 12:00 PM EDT
Dear Families and Friends,
The Atypical HUS Foundation is pleased to invite you to the aHUS Conference in Seattle, Washington, May 5 - 7, 2017 at the Seattle Marriott Bellevue Hotel. Please enroll today and make plans to join us for this informative, supportive and even "fun" medical conference. This conference is brought to you free of charge by The Atypical HUS Foundation, with support from Alexion Pharmaceuticals. All you need to do is get to Seattle. We take of your hotel, food and registration costs if you attend all the sessions.
As the only patient advocacy foundation in the United States dedicated to educating and serving those with Atypical HUS, this is your best opportunity to learn of the latest in medical care, clinical trials, on-going research and learn about this disease from prominent doctors and clinicians who work directly with Atypical HUS. But, most importantly, an aHUS Conference provides you with the opportunity to personally meet and develop relationships with other patients and caregivers affected by this disease. There is nothing that compares to meeting with someone face-to-face that is dealing with the same daily struggles as your own. Caregivers and patients alike will find strength in connecting with others and learning from them. Our attendees often remark that our conferences are the highlight of their year and great bonds of friendship have been formed through these meetings. We are working diligently on putting together an agenda that includes the latest in research, drug development, treatment, disease education, care-giving support, fundraising opportunities and fun activities, including two casual, themed dinners.
Enroll today as seating is limited. Don't be left out!
See you in Seattle!
All registered guests must attend all classroom, meal and social activities sessions to have your room paid for.
Why? The conferences are set-up to create an environment that encourages social interaction in addition to the knowledge gained in our classroom sessions. We love to be able to provide these experiences for our aHUS community and are thrilled when we see people interacting together and the comradery of the social events. History has taught us that the friendships made and personal experiences shared by our guests at the conferences have led to building long term relationships and a strong support system.
On the downside, however, these functions are extremely expensive and we hate to see the Foundation’s funds misused by people coming to enjoy the social events, rooms and food without really being invested in the learning experience. The Foundations funds are extremely coveted and certainly not unlimited and any use of them impacts our ability to continue holding conferences and doing outreach.
The Foundation exists to assist all impacted by this disease. We have filled all the conferences that we have offered to-date and expect that trend to continue. An empty seat could have been filled by someone else.
This has been a tricky area for us. Many of our patients are young children and many of our adult patients have young children. In the past, we have welcomed children into the sessions, however, in that this is a learning environment we have found that most times they become bored and can affect other attendees’ s ability to focus on our speakers. You know your children better than anyone so if you feel they can attend without causing too much distraction, they are welcome to come. We simply ask that parents remain aware and in control of the children and if they need to leave for a time period, we understand. Individual circumstances can be addressed directly with Dave Deffenbaugh, email@example.com.
The Foundation will be offering a “family focused” conference in the Fall at either Disneyland or Disney World. Details to follow.