Questions and Answers about our Patient Support Group Meetings

What will I get out of a patient support group meeting?
Many of our patient support group meetings feature a speaker, usually a health care professional. They speak on many different topics relevant to patients living with bone marrow failure diseases. Sometimes, this may include information about new treatments, clinical trials or research results.
In addition, support group meetings always include an opportunity to talk with other patients. Many people find it useful to talk to others who can relate to their health care challenges and share potential solutions or coping strategies.
Finally, our patient support group meetings also include a resource table where you can pick up brochures, information booklets, and resources related to aplastic anemia, myelodysplasia and PNH.

Is this similar to a group therapy session?
No, our patient support group meetings are not therapy sessions. They are peer support meetings, facilitated by an AAMAC staff person, not by a therapist. However, many attendees find the meetings supportive and therapeutic.

How many people usually attend?
Most meeting consist of 5-10 patients and the facilitator and speaker.

Will I learn anything new about my condition?
This depends on the content of the meeting and the degree of knowledge you already have about your condition. Most people learn something new just by talking with others who have a similar condition.

I’m not comfortable talking in groups. Can I still attend?
Yes. There is no pressure to speak at meetings other than to introduce yourself. There is also time for one-on-one mingling at the start and end of each meeting.

Do I have to attend regularly?
No. You can come regularly or occasionally, whatever suits you.

Why do I have to register in advance?
Advance registration ensures that we have enough people to make it worthwhile for the speaker. It also allows us to ensure we have adequate refreshments. However, if you make a last-minute decision to come, that is OK, too. Just check out website first to ensure the meeting is still going ahead.

Can I suggest a topic for a meeting?
Absolutely. Please email our office with any suggestions.

Is there any benefit to attending if I don’t have the disease that the speaker is addressing?
Yes, there is often overlap among the three diseases we support so some of the material may be applicable to you. Also, many patients benefit from talking to others who are coping with similar illnesses. Each meeting includes some time for discussion among the participants.

Resources

Presentations

New MDS Treatments & General Overview – Dr. Michael Delorme

07-10-2017 - 14:10

New MDS Treatments & General Overview – Dr. Michael Delorme

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Presentations

09-09-2015 - 14:09

Living with MDS – Managing the Disease, Treatment & Side Effects

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Patient Support

Questions and Answers about our Patient Support Group Meetings

Resources

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Presentations

Presentations

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Presentations