Genetic Alliance UK

Illumina and Genetic Alliance Launch $120 Million Global Initiative to Increase Equity and Improve Outcomes for Families Impacted by Genetic Disease

Retrieved on: 
Tuesday, November 16, 2021

"Since our inception in 1986, Genetic Alliance's mission has been to realize a world in which those affected by genetic disease are diagnosed and offered interventions to alleviate their suffering," said Genetic Alliance CEO, Sharon Terry.

Key Points: 
  • "Since our inception in 1986, Genetic Alliance's mission has been to realize a world in which those affected by genetic disease are diagnosed and offered interventions to alleviate their suffering," said Genetic Alliance CEO, Sharon Terry.
  • Genetic disease affects over 300 million individuals worldwide, the vast majority of whom are children.
  • I applaud Genetic Alliance for launching this important initiative to improve access to this life-changing technology.
  • "iHope Genetic Health will change the trajectory of genomic medicine worldwide, helping patients who may have otherwise been invisible.

Worldwide Rare Disease Genetic Testing Industry to 2026 - Development in Genetic Testing Technologies is Driving Growth - ResearchAndMarkets.com

Retrieved on: 
Wednesday, June 9, 2021

In December 2020, a report published in European Centre for Disease Prevention and Control assessed the risk of new virus variants in Europe.

Key Points: 
  • In December 2020, a report published in European Centre for Disease Prevention and Control assessed the risk of new virus variants in Europe.
  • According to the survey, the pandemic negatively affected rare disease patients and caregivers due to lack of access to healthcare, diet, and treatment.
  • North America is expected to dominate the Rare Disease Genetic Testing market over the forecast period.
  • In June 2018, Genome Canada announced a national initiative of sequencing 30,000 rare disease patient samples and their relatives for precision medicine implementation.

The Children's National Hospital Rare Disease Institute And Takeda Partner To Standardize Care For Patients With Rare Diseases

Retrieved on: 
Monday, March 1, 2021

It can take years for patients to receive a correct diagnosis for rare diseases.

Key Points: 
  • It can take years for patients to receive a correct diagnosis for rare diseases.
  • , founding director of the Children's National Rare Disease Institute and chief of the Division of Genetics and Metabolism at the hospital.
  • In addition, this partnership underscores our commitment to driving continuous innovation and personalized care for patients with rare diseases."
  • The Children's National Rare Disease Institute is a first-of-its-kind center focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases.

Illuminating the Heroes of Rare Diseases

Retrieved on: 
Friday, February 26, 2021

Rare Disease Day is an annual event working towards equitable access to diagnosis, treatment, health, social care and opportunity for people living with a rare disease.

Key Points: 
  • Rare Disease Day is an annual event working towards equitable access to diagnosis, treatment, health, social care and opportunity for people living with a rare disease.
  • There are over 7,000 different rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening.
  • Nicole Millis, CEO of Rare Voices Australia said: Gene testing and whole-genome sequencing are instrumental to the detection of rare diseases.
  • The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

Cyclo Therapeutics Unveils New Corporate Identity and Reaffirms Commitment to Improving Quality of Life and Providing Hope for Patients and Families

Retrieved on: 
Monday, February 22, 2021

In recognition of Rare Disease Day, we reaffirm our commitment to patients and families.

Key Points: 
  • In recognition of Rare Disease Day, we reaffirm our commitment to patients and families.
  • Our re-branding reflects an identity in line with our mission and vision to bring hope to patients and families in indications where there remains significant unmet medical need.
  • Dedicated to developing life-changing medicines through science and innovation for patients and families suffering from disease.
  • Providing hope through patient-focused drug development to improve quality of life.

National Organization for Rare Disorders Launches Natural History Study for Undiagnosed Rare Diseases

Retrieved on: 
Friday, February 28, 2020

An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation, according to the National Institutes of Health.

Key Points: 
  • An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation, according to the National Institutes of Health.
  • The Undiagnosed Rare Disease Registry consists of electronic surveys to collect information about the patient experience and disease progression over time.
  • The Undiagnosed Rare Disease Registry is part of NORD's patient-powered IAMRARE natural history study platform.
  • The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases.