”As we approach Rare Disease Day 2025, I urge you to join me in raising awareness about Turner syndrome and other rare conditions. Let us work together to amplify the voices of those with rare diseases and ensure that they have access to the care and support they need to thrive.’ Read...
”As we approach Rare Disease Day 2025, I urge you to join me in raising awareness about Turner syndrome and other rare conditions. Let us work together to amplify the voices of those with rare diseases and ensure that they have access to the care and support they need to thrive.’ Read...
Rare diseaseRare disease day 2014Translational research resourcesUndiagnosed diseaseWe reflect on the worldwide research accomplishments, orphan product approvals, and the commitments by the rare diseases community. Major collaborative efforts by the public and private sectors increased interventions and ...
40 per cent of Swedes with a rare condition, or their family members, state that a relationship has ended due to a rare condition, according to a study by Swedish biopharmaceutical company Sobi. In addition, 63 per cent say that the disease has prevented
5:20 pm: PANEL DISCUSSION: Strategies to promote research discoveries and development of orphan products to improve the health of people with rare disease 6:00 pm - Chairperson's Closing Remarks — END OF DAY 1— Event sponsors Gold Sponsor Associate Sponsor Assocaite Sponsor Become a...
social care and opportunity all through their life. Most of these patients endure rare diseases, which don’t seem to have approved treatments or a cure in the near future. The theme of this year’s World Rare Disease Day is‘Show Your Stripes and Share Your Colo...
In the last leap year in 2008, 29 February was chosen to mark Rare Disease Day by EURORDIS, the European Organisation for Rare Diseases. This year, this rare day will again serve to raise awareness of the plight of patients with rare disorders. Rare diseases fail to attract commercial resear...
Reducing DD would improve psychological effects, such as concentration on everyday life (OR 3.5; 95%CI 1.5–7.9). The influence of the social implications and functional repercussions of the disease was greater in persons with DD (22.4 vs 20 and 10.6 vs 9.4, respectively). See Figure 3. ...
Alexion Rare Disease Debbie Drane Senior Vice President Global C... CSL Behring Alan J Balch CEO Patient Advocate Foundation and National Patient Advocate Foundation Femida Gwadry‐Sridhar Founder and CEO Pulse Infoframe Inc. Monica Weldon President/Chief Executive Offi... SYNGAP1 Foundation Christine...
(RADs) masquerading as obesity Karen L HERBST Department of Medicine, University of California, San Diego and Veteran's Affairs San Diego Healthcare System, USA Rare adipose disorders (RADs) including multiple symmetric lipomatosis (MSL), lipedema and Dercum's disease (DD) may be misdi- ag...