Global Resources and Initiatives

Below are a list of resources available from each member organization. Please contact the respective organization to get more information.

Patients and Caregivers

Topic of Resource Name of Resource Language Organization Format
Advocacy Advice on HTA's Health Technology Appraisals English MDS UK Patient Support Group Email
Advocacy Treatment of elderly MDS patients English MDS UK Patient Support Group Print, Online
Blood Transfusion Blood Transfusions patient guide English Aplastic Anemia & MDS International Foundation Print
Clinical Trials in MDS Clinical Trials Factsheet English Aplastic Anemia & MDS International Foundation Print
Clinical Trials in MDS Clinical Trials Factsheet English MDS UK Patient Support Group Print, Online
Clinical Trials in MDS MDS Clinical Trials List German LHRM-MDS PAT-IG, Germany Online
Clinical Trials in MDS MDS Clinical Trials List English MDS UK Patient Support Group Print, Online
Drug Treatment Information MDS Drug Therapies patient guide English Aplastic Anemia & MDS International Foundation Print
Fatigue in MDS Fatigue Factsheet English MDS UK Patient Support Group Print, Online
General Patient MDS Information 100 Questions and Answers Book English MDS Foundation Print
General Patient MDS Information AA&MDSIF patient brochure English Aplastic Anemia & MDS International Foundation Print
General Patient MDS Information Building Blocks of Hope English, Canadian-English,
Canadian-French, German
MDS Foundation Print, Online
General Patient MDS Information Communities of Hope fact sheet English Aplastic Anemia & MDS International Foundation Print
General Patient MDS Information Global Patient Support Groups Multiple Languages MDS Foundation Live Event
General Patient MDS Information International and US Patient and
Family Conferences (Various languages)
Multiple Languages MDS Foundation Live Event
General Patient MDS Information Interviews with MDS Experts English, Spanish, French, Portuguese, Italian, German Aplastic Anemia & MDS International Foundation Online
General Patient MDS Information Live events MDS-related patient- & and family days German LHRM-MDS PAT-IG, Germany Online
General Patient MDS Information Local patient meetings English MDS UK Patient Support Group Live Event
General Patient MDS Information MDS Educational Resources English, Canadian-English, Canadian-French,
Dutch, Portuguese, Italian, German
MDS Foundation Online
General Patient MDS Information MDS Foundation App English MDS Foundation Mobile App
General Patient MDS Information MDS Handbook English MDS UK Patient Support Group Print, Online
General Patient MDS Information MDS Handbook - Understanding MDS patient guide English, Spanish, French Aplastic Anemia & MDS International Foundation Print
General Patient MDS Information MDS Interactive learning modules English Aplastic Anemia & MDS International Foundation Online
General Patient MDS Information MDS Publications English, Spanish, French, Portuguese, Italian, German Aplastic Anemia & MDS International Foundation Online
General Patient MDS Information MDS Publications English, French Aplastic Anemia and Myelodsyplasia Association of Canada Online
General Patient MDS Information MDS/MDS Related Fact Sheets English Aplastic Anemia and Myelodsyplasia Association of Canada Print, Online
General Patient MDS Information MDS/MDS Related Fact Sheets English Aplastic Anemia & MDS International Foundation Online
General Patient MDS Information MDS-Quiz German LHRM-MDS PAT-IG, Germany Online
General Patient MDS Information MDS-Video English, German, Spanish LHRM-MDS PAT-IG, Germany Online
General Patient MDS Information Online Learning Center English Aplastic Anemia & MDS International Foundation Online
General Patient MDS Information Online Learning Center fact sheet English Aplastic Anemia & MDS International Foundation Print
General Patient MDS Information Patient and Family Conferences (6x/year) English Aplastic Anemia & MDS International Foundation Live Event
General Patient MDS Information Patient and Family Information Meetings English, French Aplastic Anemia and Myelodsyplasia Association of Canada Live Event
General Patient MDS Information Patient Educator (phone and email) English Aplastic Anemia & MDS International Foundation Live Event
General Patient MDS Information Patient Forum Days English MDS UK Patient Support Group Live Event
General Patient MDS Information Patient Information meetings - videos German LHRM-MDS PAT-IG, Germany Online
General Patient MDS Information Patient Liaison (phone and email) English MDS Foundation Telephone, Email
General Patient MDS Information Publications English, French Aplastic Anemia and Myelodsyplasia Association of Canada Print
General Patient MDS Information Several MDS-related Brochures and Publications German LHRM-MDS PAT-IG, Germany Print
General Patient MDS Information Support Connection English Aplastic Anemia & MDS International Foundation Live Event
General Patient MDS Information Telephone Helpline English MDS UK Patient Support Group Telephone, Email
General Patient MDS Information Webcasts English Aplastic Anemia & MDS International Foundation Online
General Patient MDS Information Webinars English MDS Foundation Online
General Patient MDS Information Webinars (45+ MDS/MPN Related) English Aplastic Anemia & MDS International Foundation Online
General Patient MDS Information What Does My Bone Marrow Do? English, Dutch, Italian, German and Portuguese MDS Foundation Print, Online
General Patient MDS Information What is MDS? English Aplastic Anemia & MDS International Foundation Mobile App
Glossary Glossaries for MDS-related terminology German, English LHRM-MDS PAT-IG, Germany Online
Glossary Glossary of MDS Terms English MDS Foundation Print
Iron Overload Iron Overload Factsheet English Aplastic Anemia & MDS International Foundation Print
Newsletter Connect Newsletter (Bi-monthly) English Aplastic Anemia & MDS International Foundation Online
Newsletter MDS Connection (6x/year) English Aplastic Anemia & MDS International Foundation Print
Newsletter Newsletter English MDS Foundation Print, Online
Newsletter Newsletter English MDS UK Patient Support Group Print, Online
Newsletter Newsletter Quarterly English, French Aplastic Anemia and Myelodsyplasia Association of Canada Print, Online
Nutrition in MDS Nutrition Factsheet English MDS UK Patient Support Group Print, Online
Patient Diaries MDS Treatment Tracker English Aplastic Anemia & MDS International Foundation Mobile App
Patient Diaries My MDS Plan English MDS Foundation Mobile App
Patient Diaries Patient Diary English MDS Foundation Print
Patient Diaries Patient Tracker English, French Aplastic Anemia and Myelodsyplasia Association of Canada Print
Patient Experiences Blog – www.blog4blood.de German LHRM-MDS PAT-IG, Germany Online
Patient Experiences Patient experiences and stories German LHRM-MDS PAT-IG, Germany Online
Patient Experiences Patient Experiences and Stories English MDS UK Patient Support Group Print, Online
Patient to Patient Support Communities of Hope English Aplastic Anemia & MDS International Foundation Live Event
Patient to Patient Support MDS Coping and Caring Luncheons English MDS Foundation Live Event
Patient to Patient Support Message board English MDS Foundation Online
Patient to Patient Support Message board www.marrowforums.com English Aplastic Anemia & MDS International Foundation Online
Patient to Patient Support Online Chat Forum English MDS UK Patient Support Group Online
Patient to Patient Support Peer to Peer Support English, French Aplastic Anemia and Myelodsyplasia Association of Canada Live Event
Quality Of Life in MDS Healthy Body Healthy Mind Video English MDS Foundation Print
Quality Of Life in MDS How to Evaluate Health Information on the Internet English Aplastic Anemia & MDS International Foundation Print
Quality Of Life in MDS It Takes Time to Realize Your Goals English MDS Foundation Print, Online
Quality Of Life in MDS Living Well With Bone Marrow Failure
Diseases patient guide
English Aplastic Anemia & MDS International Foundation Print
Quality Of Life in MDS Standing Up for Your Health patient guide English Aplastic Anemia & MDS International Foundation Print
Research Hematology related congresses - List English LHRM-MDS PAT-IG, Germany Online
Research MDS Research Updates English Aplastic Anemia & MDS International Foundation Online
Research MDS Research Updates English MDS Foundation Online
Research MDS Research Updates English Aplastic Anemia and Myelodsyplasia Association of Canada Print
Research Presentations from congresses English LHRM-MDS PAT-IG, Germany Online
Research Research Articles for patients English Aplastic Anemia & MDS International Foundation Print, Online
Research Research Connection (Monthly) English Aplastic Anemia & MDS International Foundation Online
Research ResearchFORpatients articles English MDS UK Patient Support Group Print, Online
Social Media Facebook German LHRM-MDS PAT-IG, Germany Online
Social Media Facebook: Public (open) and Community (closed) English MDS UK Patient Support Group Online
Social Media Social Media (Facebook, Twitter, YouTube) English Aplastic Anemia & MDS International Foundation Online
Social Media Social Media (Facebook, Twitter, YouTube) English MDS Foundation Online
Social Media Social Media (Facebook, YouTube) English Aplastic Anemia and Myelodsyplasia Association of Canada Online
Social Media Social Media fact sheet English Aplastic Anemia & MDS International Foundation Print
Social Media Twitter account English MDS UK Patient Support Group Online
Specialist Centres List of all MDS Centers of Excellence
(US and International locations)
English MDS Foundation Online
Specialist Centres MDS Specialist Centres Germany German LHRM-MDS PAT-IG, Germany Online
Specialist Centres MDS Specialist Centres UK English MDS UK Patient Support Group Online
Specialist Centres Preferential Appointments at Centers of Excellence Multiple Languages MDS Foundation Live Event
Stem Cell Transplantation Bone Marrow and Stem Cell Transplantation fact sheet English Aplastic Anemia & MDS International Foundation Print
Stem Cell Transplantation Marrowforums: Hosted Online Discussions fact sheet English Aplastic Anemia & MDS International Foundation Print
Stem Cell Transplantation Message board www.marrowforums.com English Aplastic Anemia and Myelodsyplasia Association of Canada Online
Surveys - Questionnaires MDS Patient Survey UK English MDS UK Patient Support Group Print, Online
Travel Insurance Travel Insurance Factsheet English MDS UK Patient Support Group Print, Online

Healthcare Professionals

Topic of Resource Name of Resource Language Organization Format
Clinical Staff MDS Information AA&MDSIF Health Professional brochure English Aplastic Anemia & MDS International Foundation Print
Clinical Staff MDS Information Access to newest MDS publications English MDS Foundation Online
Clinical Staff MDS Information Access to Touch Oncology English MDS Foundation Online
Clinical Staff MDS Information Continuing education enduring programs English Aplastic Anemia & MDS International Foundation Online
Clinical Staff MDS Information Continuing education enduring programs (English) English MDS Foundation Online
Clinical Staff MDS Information Exhibitions at various international and
US Congresses/Annual Meetings
English MDS Foundation Live Event
Clinical Staff MDS Information GP Factsheet English MDS UK Patient Support Group Print, Online
Clinical Staff MDS Information Interactive learning modules for nurses English Aplastic Anemia & MDS International Foundation Online
Clinical Staff MDS Information International Congress Meetings
(English, held every two years)
English MDS Foundation Live Event
Clinical Staff MDS Information International Nurse Leadership Board English MDS Foundation Live Event
Clinical Staff MDS Information International Working Group – MDS/MPN English MDS Foundation Live Event
Clinical Staff MDS Information International Working Group – Prognosis of MDS
(General and Molecular)
English MDS Foundation Live Event
Clinical Staff MDS Information MDS/MPN Rounds (2x/year) English Aplastic Anemia & MDS International Foundation Live Event
Clinical Staff MDS Information Satellite Symposia prior to ASH Annual Meeting (English) English MDS Foundation Live Event
Clinical Staff MDS Information The Diagnostic Spectrum of MDS, MDS/MPN and
MF reference card (English)
English Aplastic Anemia & MDS International Foundation Print
Clinical Staff MDS Information Webcasts English Aplastic Anemia & MDS International Foundation Online
Clinical Staff MDS Information Webcasts English MDS Foundation Online
Clinical Trials in MDS Information on newest MDS clinical trials English MDS Foundation Online
Drug Treatment Information Subcutaneous Chemotherapy Video English MDS Foundation Print
Drug Treatment Information Treating MDS Toolkit English Aplastic Anemia & MDS International Foundation Print, Online
Financial assistance Discounted subscription to Leukemia Research English MDS Foundation Print, Online
Financial assistance Nursing Scholarships (Two awarded annually) English Aplastic Anemia and Myelodsyplasia Association of Canada Grant
Financial assistance PNH Grant English Aplastic Anemia & MDS International Foundation Grant
Financial assistance Research Grants English Aplastic Anemia and Myelodsyplasia Association of Canada Grant
Financial assistance Research Grants (two years) English Aplastic Anemia & MDS International Foundation Grant
Financial assistance Summer Fellowships English Aplastic Anemia & MDS International Foundation Grant
Financial assistance Young Investigator Research Grants English MDS Foundation Live Event
General Patient MDS Information Clinical Toolbox English MDS Foundation Online
General Patient MDS Information Interviews with experts English Aplastic Anemia & MDS International Foundation Online
General Patient MDS Information Interviews with experts English MDS Foundation Online
General Patient MDS Information MDS Foundation App English MDS Foundation Mobile App
General Patient MDS Information Patient Education Materials English, French, German, Italian,
Portuguese, Spanish
Aplastic Anemia & MDS International Foundation Print
General Patient MDS Information Patient Education Materials English, German, Italian, Portuguese,
Dutch, Canadian-English, Canadian-French
MDS Foundation Print
General Patient MDS Information Patient Education Materials English, French Aplastic Anemia and Myelodsyplasia Association of Canada Print
General Patient MDS Information Webcasts English Aplastic Anemia and Myelodsyplasia Association of Canada Online
General Patient MDS Information What Is MDS? English Aplastic Anemia & MDS International Foundation Mobile App
IPSS - MDS classification IPSS-R Calculator English MDS Foundation Print, Online
IPSS - MDS classification IPSS-R Calculator App English MDS Foundation Mobile App
IPSS - MDS classification MDS Risk Classification English Aplastic Anemia & MDS International Foundation Mobile App
Newsletter Newsletter English MDS Foundation Print, Online
Newsletter Newsletter Physicians Connection 4x/year English Aplastic Anemia & MDS International Foundation Online
Newsletter Newsletter Quarterly English, French Aplastic Anemia and Myelodsyplasia Association of Canada Print, Online
Patient Diaries Patient Tracker English, French Aplastic Anemia and Myelodsyplasia Association of Canada Print
Research International Bone Marrow Failure Disease
Scientific Symposium (every two years)
English Aplastic Anemia & MDS International Foundation Live Event
Research Satellite Symposium at ONS Congress English Aplastic Anemia & MDS International Foundation Live Event
Research Satellite Symposium prior to ASH Annual Meeting English Aplastic Anemia & MDS International Foundation Live Event
Social Media Social Media (Twitter, You Tube) English Aplastic Anemia & MDS International Foundation Online
Social Media Social Media (Twitter, You Tube, Facebook) English MDS Foundation Online
Social Media Social Media (You Tube) English Aplastic Anemia and Myelodsyplasia Association of Canada Online
Specialist Centres MDSF Center of Excellence Program including
patient referrals
English MDS Foundation Live Event
Stem Cell Transplantation Regional Bone Marrow Failure Disease Symposia English Aplastic Anemia & MDS International Foundation Live Event