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Daily Archives: October 22, 2021

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South African Rare Disease Advocates Aim to Establish a National Rare Disease Policy
source: pixabay.com

South African Rare Disease Advocates Aim to Establish a National Rare Disease Policy

  • Post author:Trudy Horsting
  • Post published:October 22, 2021
  • Post category:Rare Disease

Rare Diseases South Africa (RDSA) and The Rare Diseases Access Initiative (RDAI) have recently come together to talk about the issues that those living with rare diseases in South Africa…

Continue Reading South African Rare Disease Advocates Aim to Establish a National Rare Disease Policy
New Beer To Raise Awareness for Sanfilippo Syndrome

New Beer To Raise Awareness for Sanfilippo Syndrome

  • Post author:Kendall Mason
  • Post published:October 22, 2021
  • Post category:Sanfilippo Syndrome

A new ale is hitting Doubleday’s and The Bit in Dobbs Ferry with a very special purpose. Named "Jacob the Warrior" IPA, this beer was created to raise awareness for…

Continue Reading New Beer To Raise Awareness for Sanfilippo Syndrome
Leptospirosis is Being Spread by Rats in NYC

Leptospirosis is Being Spread by Rats in NYC

  • Post author:Kendall Mason
  • Post published:October 22, 2021
  • Post category:Leptospirosis

Rats are a part of New York City - if you've ever been, you've definitely seen them. Most of the time, they're just pests on the streets or subway that…

Continue Reading Leptospirosis is Being Spread by Rats in NYC
LAVA-051 for CLL Earns Orphan Drug Designation
Source: Pixabay.com

LAVA-051 for CLL Earns Orphan Drug Designation

  • Post author:Jessica Lynn
  • Post published:October 22, 2021
  • Post category:Chronic Lymphocytic Leukemia

According to a news release from biotechnology company LAVA Therapeutics N.V. ("LAVA"), the company's therapeutic candidate LAVA-051 recently earned Orphan Drug designation from the FDA. The therapy is designed for…

Continue Reading LAVA-051 for CLL Earns Orphan Drug Designation
Rare Classroom: Von Hippel-Lindau Syndrome
source: shutterstock

Rare Classroom: Von Hippel-Lindau Syndrome

  • Post author:James Moore
  • Post published:October 22, 2021
  • Post category:von Hippel-Lindau Syndrome

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

Continue Reading Rare Classroom: Von Hippel-Lindau Syndrome
IMPACT Survey Enrollment on Osteogenesis Imperfecta Now Complete
source: pixabay.com

IMPACT Survey Enrollment on Osteogenesis Imperfecta Now Complete

  • Post author:Jessica Lynn
  • Post published:October 22, 2021
  • Post category:Osteogenesis Imperfecta

According to a news release from biopharmaceutical company Mereo BioPharma Group plc ("Mereo"), the Osteogenesis Imperfecta Foundation (OIF), and the Osteogenesis Imperfecta Federation Europe (OIFE), enrollment is now complete for…

Continue Reading IMPACT Survey Enrollment on Osteogenesis Imperfecta Now Complete
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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