Posts by: Mary Chapman

News

Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run ... Read more

February 1, 2019

FDA Revising ‘Draft Guidance’ on Developing Treatments for Rare Diseases

News

The U.S. Food and Drug Administration(FDA) is updating its 2015 draft guidelines for drug discovery in rare diseases, with new guidance on natural history— how disorders such as spinal ... Read more

December 7, 2018December 7, 2018

Adynovate Approved in Canada for Hemophilia A Patients Younger Than 12

News

Health Canada recently authorized Shire Pharma Canada‘s treatment Adynovate for hemophilia A patients younger than 12 based on results of a Phase 3 clinical trial. Approved Nov. 21, the injectible ... Read more

December 5, 2018December 5, 2018

For 25th Year, College Scholarship Run by NuFactor Will Honor Hemophilic’s Memory by Helping Others

News

NuFactor Specialty Pharmacy is seeking applicants for next year’s Eric Dostie Memorial College Scholarship, established 25 years ago to honor the memory of an inspirational boy with hemophilia who died ... Read more

November 21, 2018November 21, 2018

‘Hemophilia: The Musical’ Lets Teens Confront Their Illness, and Educate Others, via Song

News

The workshop and production process over, it was curtains up for “Hemophilia: The Musical,” a unique theatrical event starring high school students affected by bleeding disorders. Performed at New ... Read more

October 18, 2018October 18, 2018

Students Chosen for “Hemophilia: The Musical” Production Announced by BioMarin and Believe Limited

News

BioMarin Pharmaceutical Inc. and Believe Limited have announced the students chosen to participate in the theatrical production of “Hemophilia: The Musical,” a program that aims to empower the bleeding community through performance ... Read more

October 18, 2018October 18, 2018

Octapharma USA Sponsors Retreat for Women With Bleeding Disorders and Screens ‘Bombardier Blood’

News

There are still too many women with bleeding disorders who, despite symptoms, are unaware of their disease. That circumstance will be a major topic Oct. 19-21 at The Fourth ... Read more

September 20, 2018September 20, 2018

Call Out for Original Artwork by Hemophilia Patients To Be Part of NHF October Conference

News

Creative expression within the bleeding disorders community will be on display for the thousands expected to attend the National Hemophilia Foundation’s (NHF) Annual Bleeding Disorders Conference next month in Orlando, Florida. ... Read more

September 19, 2018September 19, 2018

Bike Ride Honors Barry Haarde, Who Championed Fight Against Bleeding Disorders

News

Barry Haarde was a tough man to stop. Despite a decades-long battle with HIV and a near-death brush with hepatitis C, he made history in 2012 as the first ... Read more

September 17, 2018September 17, 2018

Octapharma USA, GutMonkey Sponsor Week-long Adventure Trip to San Juan Islands

News

In keeping with its mission to change how members of the bleeding disorder community think about their condition, Octapharma USA has joined with GutMonkey to provide a challenging week-long, ... Read more

Posts by: Mary Chapman

Mary Chapman

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide

FDA Revising ‘Draft Guidance’ on Developing Treatments for Rare Diseases

Adynovate Approved in Canada for Hemophilia A Patients Younger Than 12

For 25th Year, College Scholarship Run by NuFactor Will Honor Hemophilic’s Memory by Helping Others

‘Hemophilia: The Musical’ Lets Teens Confront Their Illness, and Educate Others, via Song

Students Chosen for “Hemophilia: The Musical” Production Announced by BioMarin and Believe Limited

Octapharma USA Sponsors Retreat for Women With Bleeding Disorders and Screens ‘Bombardier Blood’

Call Out for Original Artwork by Hemophilia Patients To Be Part of NHF October Conference

Bike Ride Honors Barry Haarde, Who Championed Fight Against Bleeding Disorders

Octapharma USA, GutMonkey Sponsor Week-long Adventure Trip to San Juan Islands

Pin It on Pinterest