Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > News and Events
Register FAQ Search Today's Posts Mark Forums Read

News and Events News related to bone marrow failure diseases

Reply
 
Thread Tools Search this Thread
  #1  
Old Mon Feb 27, 2012, 01:15 PM
Marrowforums Marrowforums is offline
Marrowforums.org
 
Join Date: Jul 2006
Posts: 881
Rare Disease Day; AA and MDS Awareness Week



Wednesday February 29, 2012 marks the fifth annual International Rare Disease Day spearheaded by Rare Diseases Europe (EURORDIS), a patient-driven alliance of rare disease patient organizations.

At least 23 countries are participating in coordinated activities to call attention to rare diseases and the needs of rare disease patients. In the U.S., the National Organization for Rare Disorders (NORD) is also publicizing Rare Disease Day on February 29.

The next day, Thursday March 1, kicks off Aplastic Anemia and MDS Awareness Week from March 1 to March 7, led by the Aplastic Anemia & MDS International Foundation (AA&MDSIF).

Want to help?

Suggestions for your involvement are offered by EURORDIS (click here), NORAD (click here), and the AA&MDSIF (click here). By telling your own story and making your voice heard you can help the community of rare disease patients and show the world we are "Rare but Strong Together" in keeping with this year's theme: solidarity.

Rare diseases

Rare diseases are at a disadvantage for both basic medical research and for development of potential cures by pharmaceutical companies. The organizations that serve patients with rare diseases may not be heard amidst the noise generated by organizations for more common diseases. The Orphan Drug program of the U.S. Food and Drug Administration is one program created to make sure these patients aren't forgotten. There are similar programs in Europe.

Difficulties in diagnosis and recordkeeping have made it hard to know exactly how prevalent aplastic anemia, MDS, and PNH really are, but estimates have been made:
  • Acquired bone marrow failure diseases are diagnosed in more than 15,000 people each year in the U.S.

  • There are 600 to 900 new aplastic anemia diagnoses each year in the U.S.

  • Aplastic anemia is two to three times more common in Asian countries than in the U.S. and Europe, with about 6,000 to 7,000 new diagnoses reported annually worldwide.

  • There are an estimated 12,000 to 20,000 new MDS cases in the U.S. each year.

  • There are estimated to be as many as 21,000 people with PNH and 1,700 new cases each year in North America and Europe.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
AA evolving into MDS vs. hypocellular MDS? Coping1 MDS 7 Sun Sep 23, 2012 05:04 PM
How Does AA Progress to MDS? Greg H AA 10 Fri Sep 9, 2011 07:00 AM
AA with an autoimmune disease? Deanna16 AA 16 Thu Apr 8, 2010 01:19 PM
Father diagnosed MDS or AA hypocellular and treated with ATG vicid AA 9 Thu Feb 18, 2010 01:26 PM
aa or mds? carolyn AA 7 Wed Jul 22, 2009 09:03 AM


All times are GMT -4. The time now is 11:21 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2019 Marrowforums.org