pediatric patient / parent

New marrow: SCT, BMT, and GvHD with Dr. Corey Cutler, Medical Director, Stem Cell Transplantation Program at Dana Farber Cancer Institute

Learn all about the risks, benefits, and side effects of the transplantation process.

Order Patient Educational Materials

Intro:

<p>All of our materials are written in plain language and reviewed by highly respected and recognized medical doctors who are experts in bone marrow failure diseases.</p>

Research Summaries for Patients

AAMDSIF Research Summaries are clearly written summaries of the most recent research on rare blood cancers and bone marrow failure diseases presented at the most prestigious and important international scientific gatherings.

Select the research summary(s) you would like to receive (choose all that apply)

Research Summary - Aplastic Anemia and PNH Research Summaries Patients

Research Summary - MDS and AML Research Summaries for Patients

Research Summary - Bone Marrow Failure Disease Scientific Symposium for Patients

Aplastic Anemia Toolkit

To learn more, see our Aplastic Anemia Toolkit page.

Select the Aplastic Anemia Toolkit you would like to receive

Aplastic Anemia Toolkit for Patients : This 3-ring binder includes all Aplastic Anemia Toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles.

Aplastic Anemia Toolkit for Health Care Providers : This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their Aplastic Anemia journey

MDS Toolkit

To learn more, see our MDS Toolkit page.

Select the MDS Toolkit you would like to receive

MDS Toolkit for Patients : This 3-ring binder includes all MDS Toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles.

MDS Toolkit for Health Care Providers : This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their MDS journey.

PNH Toolkit

To learn more, see our PNH Toolkit page.

Select the PNH Toolkit you would like to receive

PNH Toolkit for Patients : This 3-ring binder includes all PNH Toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles.

PNH Toolkit for Health Care Providers : This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their PNH journey.

Required Information

Please provide us with the following information to complete your request.

Your First Name *

Your Last Name *

Organization

Street Address *

Address Additional

City *

State / Province

ZIP / Postal Code *

Country

Your Email *

Email and Privacy

You understand and acknowledge that you are providing the above information, including any personally identifiable information, to AAMDS, the collection, storage and use of which is governed by AAMDS’ Privacy Policy. By checking the ‘I agree’ box below, you are agreeing to the terms and conditions of our Privacy Policy and affirming that you wish to receive the information or services identified as part of this form. If you do not agree to the terms and conditions of our Privacy Policy or do not wish to receive the information or services identified as part of this form, please check the “I do not agree” box below. Please note that AAMDS does not sell any personal information.

Yes, I would like to receive relevant email news, events, and updates from AA&MDSIF and I agree with the Privacy Policy Above.

No, I do not wish to receive relevant email news, events, and updates from AA&MDSIF.

Email Opt-In *

I am a *

Bone marrow failure disease *

If "other", please specify

Which category best describes you?

How did you hear about us?

Please select all that apply.

Optional Information

In order to keep you informed with relevant news, events, and updates, we ask that you provide us with this optional information.

Home Phone

Work Phone

Special Instructions

If you require multiple copies of any of these documents, please make note of which documents, and the specific quantities desired here.

Special instructions

If you require multiple copies of any of these documents, please make note of which documents, and the specific quantities desired here.

Leave this field blank

Subscribe for Latest AAMDSIF Updates

AAMDSIF newsletter / email sign-up. You’ll learn the latest in treatments, updates on events, and topics for webinars. Discover patient stories and support groups, too, when you join the email list. Of course you can unsubscribe at any time, but we need you---together we are strong!

Ravulizumab-cwvz

Ravulizumab-cwvz (Ultomiris®) is a drug approved by the U.S. Food and Drug Administration (FDA) in 2018 to treat PNH. ULTOMIRIS® is a long-acting C5 inhibitor that works by inhibiting the C5 protein in the terminal complement cascade. ULTOMIRIS® is a prescription medicine called a

Sarah was ready for a great career, but the diagnosis changed her plans... temporarily!

Imagine being ready to launch your career, then being thrown off course by both aplastic anemia and PNH, all at once! Listen to Sarah's story of her path to survivorship here.

From Diagnosis to Transplant to Survivorship

"Three hours after they drew my blood, my doctor called to tell me to go immediately to the emergency room!" Because Kirollos was a pharmacy student, he understood that having such low blood counts needed fast treatment, but he was still surprised. Discover how he progressed from diagnosis to transplant to survivorship quickly here.

"Never give up!" Inspiration from patient, to patient

"Never give up!" That's Brandi's advice to patients. Her diagnosis was months in coming, and then more time to find the best allogenic donor for her transplant---over 19 months in the hospital between diagnosis and successful transplant.

Providence (RI) LLS Blood Cancer Support Group

We are pleased to let patients and families know about the LLS blood cancer support group opportunities around the country. These support groups are facilitated by LLS, not AAMDSIF. This group meets on the first Wednesday of every month from 5:30pm-7:00pm. The group is facilitated by Jim Willsey, Ellie Colins, Susan Garland and Diane Passantino. If you would like to join the support group or want more information, please contact LLS, (401) 943-8888.

Lansing (MI) LLS Virtual Blood Cancer Support Group

We are pleased to let patients and families know about the LLS blood cancer support group opportunities around the country. These support groups are facilitated by LLS, not AAMDSIF. This group meets on the the second Thursday of the month from 6:00pm - 7:00pm at Breslin Cancer Center 401 W Greenlawn Avenue Lansing, MI 48910. The group is facilitated by Robin Willner. There is no charge to participate in this group but pre-registration is required, https://www.llsform.org/ho0999SER/LAN1FSG/index.html

Little Rock (AR) LLS Virtual Blood Cancer Support Group

We are pleased to let patients and families know about the LLS blood cancer support group opportunities around the country. These support groups are facilitated by LLS, not AAMDSIF. This virtual group meets on the first Tuesday of each month from 6:00-8:00 PM. If you have any questions about the group, please contact - Harold Dean at DeanHaroldM@uams.edu or April Dumond, RN, MSN, OCN at radumond@aol.com. Regitration is required to receive the login information to join the group.

first
previous
…
23
24
25
26
27
28
29
30
31
…
next
last