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Old Sun May 23, 2010, 09:03 PM
Marrowforums Marrowforums is offline
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Join Date: Jul 2006
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Tips from Marrowforums on getting the most out of the Patient Conference:


Before the Conference
  1. Register for the conference now while it's free for those staying in the conference hotel.
  2. Make hotel reservations now while space is available and you can get the conference rate.
  3. If you live in the Bethesda area it's cheaper to stay at home instead of at the hotel even though you'll have to pay for conference registration. Make sure to register for the conference by July 9.
  4. Let the AA&MDSIF know that you "opt-in" to the conference roster. You and other attendees will receive a list of the names, cities, and email addresses of attendees who opt-in.
  5. Let the AA&MDSIF know if you have special requirements, e.g., wheelchair accommodations, dietary restrictions.
  6. Pack comfortable clothes; the meeting is informal. Bring an extra sweater or jacket because conference rooms are often cold.
  7. Review the conference agenda and plan which sessions you and your family members will want to attend. Some sessions are concurrent so you'll have to pick one session from many. Some sessions are repeated so you'll get to pick the most convenient day and time. The downloadable Marrowforums Conference Schedule Planner (described in a post below) may help you.
  8. Make a list of questions for which you'd like to get answers at the conference. Take advantage of the experts who will be there. Remember, however, that conference question-and-answer sessions are not for personal medical reviews or second opinions; more general questions are appropriate. You can also leave written questions and let the AA&MDSIF get back to you with answers.
  9. If you have concerns about flying with low platelets or when susceptible to infections, talk to your doctor about reasonable precautions. Avoiding dehydration is good advice for all air travelers.
  10. Write down your doctors' contact information to bring with you in case you you need get in touch with them before you return home.
  11. Make sure you have enough prescription medicine for the duration of the trip.
  12. Expect some jet lag if traveling from the west. If possible, start adapting to an earlier schedule in the days preceding the conference. Otherwise, the Sunday morning sessions are going to feel brutally early!

At the Conference
  1. Attend the Pre-Conference Sessions. Much information will be presented and Saturday's sessions will get you off to a good start, especially if you were recently diagnosed or haven't been to a Patient Conference before.
  2. Take notes during conference sessions to help you remember what you learned but don't try to copy down each slide. Most slide presentations will be downloadable from the AA&MDSIF website.
  3. Divide and conquer. Where your schedule doesn't permit you to attend two conference sessions of interest, go to one and let someone else from your family go to the other. Trade notes afterwards.
  4. Talk to strangers. Make a particular effort to find other families sharing your disease, treatment, city, age group, etc. Trade stories and exchange contact information.
  5. Don't be shy about asking questions. Everyone will be learning and no question is a "dumb" question. When medical professionals talk to patients they sometimes slip into medical jargon. If you don't understand something there are probably other attendees wondering the same thing.
  6. Don't worry if you can't absorb everything you hear. Some patients who have attended the Patient Conference for years still learn more about these diseases each year.
  7. Be prepared to attend a Support Workshop without your spouse. It's the one chance that patients get to talk only to other patients and caregivers get to talk only to other caregivers, making it a unique oppotunity to speak frankly about your own concerns and difficulties.
  8. Pace yourself. If you don't have the stamina for a full morning, afternoon, and evening at the conference, take a break for a nap.
  9. If you have a medical emergency at the conference let the hotel and the AA&MDSIF staff know so they can help you find assistance. These medical facilities are near the conference hotel.
  10. Read the literature you collect to spark questions that you can have answered in person. The AA&MDSIF patient education booklets for AA, MDS, and PNH are excellent. If you don't already have the booklet for your disease and don't want to carry one home with you ask to have a copy mailed to you.
  11. Talk to exhibitors. It's a rare chance to meet representatives of the pharmaceutical companies who produce drugs for AA, MDS, and PNH and to learn about the patient support groups that also exhibit.
  12. Support the AA&MDSIF with a donation or by purchasing some of their merchandise.
  13. Say thanks to the conference sponsors. If you registered for free, they paid for your conference participation and meals.
  14. Appreciate that you've made it this far and are taking an active role in your care. Celebrate survivorship!

After the Conference
  1. Participate in Capitol Hill Advocacy Day (visiting the U.S. Capitol on Tuesday July 13). Continue the momentum at home. Contact your representatives to let your voice be heard about congressional support and funding for bone marrow failure disease research.
  2. If you can stay an extra day or two after the conference (or go early), take advantage of the conference location to visit the surrounding cities, especially the famous sites of Washington D.C., with your family.
  3. Review the literature you collected and your notes from sessions. Talk to your doctors about what you learned at the conference.
  4. Keep participating, learning, and supporting bone marrow failure disease fundraisers. Attend events in your city such as one-day seminars, the annual Walk for PNH, and the Hope, Steps & A Cure walks sponsored by the AA&MDSIF.
  5. Keep in touch with new friends and families you've met, either directly or through Marrowforums!
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