Disease

Rare Disease Day 2021: Pandemic illuminates every day social obstacles of living with a rare condition

Friday, February 26, 2021 - 10:36am

For many of the 400,000 people in Sweden living with rare conditions, restrictions affecting social life and external relations can also be a part of regular life.

Key Points: 
  • For many of the 400,000 people in Sweden living with rare conditions, restrictions affecting social life and external relations can also be a part of regular life.
  • "When the pandemic is over, it will be important to remember that many people live with restrictions even in their everyday lives.
  • "Our research around rare diseases usually focuses on finding and improving treatments for rare conditions, and with this survey we want to highlight how relationships are affected by having a rare condition.
  • Facts about rare conditions (Source: Sobi and National Centre of Competence for Rare Diseases)
    In Sweden there are an estimated 400,000 individuals living with a rare disease.

Rare Disease Day 2021: Pandemic illuminates every day social obstacles of living with a rare condition

Friday, February 26, 2021 - 10:34am

For many of the 400,000 people in Sweden living with rare conditions, restrictions affecting social life and external relations can also be a part of regular life.

Key Points: 
  • For many of the 400,000 people in Sweden living with rare conditions, restrictions affecting social life and external relations can also be a part of regular life.
  • "When the pandemic is over, it will be important to remember that many people live with restrictions even in their everyday lives.
  • "Our research around rare diseases usually focuses on finding and improving treatments for rare conditions, and with this survey we want to highlight how relationships are affected by having a rare condition.
  • Facts about rare conditions (Source: Sobi and National Centre of Competence for Rare Diseases)
    In Sweden there are an estimated 400,000 individuals living with a rare disease.

Illuminating the Heroes of Rare Diseases

Friday, February 26, 2021 - 1:41am

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.

Economic Burden of Rare Diseases in the U.S. Approached $1 Trillion in 2019, Surpassing Cost Estimates for Many Chronic Diseases

Thursday, February 25, 2021 - 6:28pm

While there are estimated to be more than 7,000 rare diseases, The National Economic Burden of Rare Disease Study includes 379 rare diseases in its assessment.

Key Points: 
  • While there are estimated to be more than 7,000 rare diseases, The National Economic Burden of Rare Disease Study includes 379 rare diseases in its assessment.
  • This estimate sheds light on a set of costs that previous studies did not examine across rare diseases.
  • The report estimates that 15.5 million individuals in the U.S. have any of the 379 rare diseases included in the study.
  • The study authors caution that their economic impact estimate represents a conservative estimate and is not generalizable to all rare diseases.

American College of Lifestyle Medicine Announces Registration, Surgeons General Panel for 2021 Conference Nov. 7-10 in Dallas-Fort Worth Area

Thursday, February 25, 2021 - 2:00pm

The agenda will bring tangible, reimbursable and evidence-based ways to integrate lifestyle medicine into the primary treatment of chronic disease.

Key Points: 
  • The agenda will bring tangible, reimbursable and evidence-based ways to integrate lifestyle medicine into the primary treatment of chronic disease.
  • A highlight of this year's conference will be a panel of four former U.S. Surgeons General Drs.
  • This distinguished panel will provide their unique perspective, including their call to action for lifestyle medicine providers.
  • Jean Tips, American College of Lifestyle Medicine, 19719835383 x 119, jtips@lifestylemedicine.org

Travere Therapeutics Recognizes Rare Disease Day 2021 and the Importance of Working Together to Innovate and Address Healthcare Disparities in Rare Disease

Thursday, February 25, 2021 - 1:00pm

SANDIEGO, Feb. 25, 2021 (GLOBE NEWSWIRE) -- TravereTherapeutics, Inc.(NASDAQ: TVTX) willjoin theNational Organization for Rare Disorders(NORD), theEuropean Organisation forRare Diseases(EURORDIS), EveryLife Foundationfor Rare Diseases, Global Genes, and rare disease advocates and patients worldwide in recognizingFebruary 28 as Rare Disease Day 2021.

Key Points: 
  • SANDIEGO, Feb. 25, 2021 (GLOBE NEWSWIRE) -- TravereTherapeutics, Inc.(NASDAQ: TVTX) willjoin theNational Organization for Rare Disorders(NORD), theEuropean Organisation forRare Diseases(EURORDIS), EveryLife Foundationfor Rare Diseases, Global Genes, and rare disease advocates and patients worldwide in recognizingFebruary 28 as Rare Disease Day 2021.
  • Rare Disease Day is an important reminder that we are stronger together in our pursuit to improve access to diagnosis, treatment and care for the rare community.
  • These organizations are dedicated to finding solutions to healthcare inequity and to continued innovation in rare disease.
  • TheBlack Women's Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color.

M6P Therapeutics Supports Rare Disease Day 2021 and Joins Global Movement to Increase Awareness of Rare Diseases

Thursday, February 25, 2021 - 12:30pm

Rare Disease Day is an annual awareness day dedicated to elevating the public understanding of rare diseases and their impact on patients lives.

Key Points: 
  • Rare Disease Day is an annual awareness day dedicated to elevating the public understanding of rare diseases and their impact on patients lives.
  • Rare Disease Day takes place every year on the last day of Februarythe rarest date on the calendarto underscore the nature of rare diseases and what patients face.
  • Rare Disease Day is sponsored in the US by the National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases.
  • The core message of NORDs Show Your Stripes campaign is to wear stripes on Rare Disease Day to raise awareness and show support for those living with rare diseases.

Industry Roundtable: How Communities Can Tackle the Mental Health and Substance Misuse Crisis to Maximize Their Collective Impact

Wednesday, February 24, 2021 - 12:55pm

"While our attention has been focused on COVID-19, we've had major public health problems raging in other critical areas in thebackground," said Amarasingham.

Key Points: 
  • "While our attention has been focused on COVID-19, we've had major public health problems raging in other critical areas in thebackground," said Amarasingham.
  • "People should understand that mental illness and substance use are diseases and have a disease process akin to physical illnesses.
  • "The HHD partners with its local mental health authority, mental health and recovery providers, and advocacy groups to increase help-seeking behaviors and reduce the stigma.
  • Combined, our solutions, Pieces Predict and Pieces Connect, create a comprehensive and unique solution for connected community health.

Cytox Launches genoSCORETM-LAB Test to Predict the Risk of Developing Alzheimer’s Disease

Wednesday, February 24, 2021 - 7:04am

Cytox Ltd, which provides non-invasive, risk assessment and patient stratification tools for Alzheimer's disease (AD) and dementia, announces the launch of its new genetic test, genoSCORETM-LAB, that can predict the risk of an individuals cognitive decline due to Alzheimers disease.

Key Points: 
  • Cytox Ltd, which provides non-invasive, risk assessment and patient stratification tools for Alzheimer's disease (AD) and dementia, announces the launch of its new genetic test, genoSCORETM-LAB, that can predict the risk of an individuals cognitive decline due to Alzheimers disease.
  • This broad genetic analysis enables the test to generate an overall risk of cognitive decline due to the disease.
  • However, research has shown that lifestyle changes can significantly mitigate the risk of developing Alzheimers disease, delay the onset of symptoms, and slow the rate of disease progression(1-5).
  • Depending on an individuals genetics, they may have been born with a higher or lower risk of developing the disease.

Global Heavy Metal Poisoning Epidemiology Forecast Report 2017-2020 & 2021-2030 - ResearchAndMarkets.com

Tuesday, February 23, 2021 - 4:28pm

The Heavy Metal Poisoning epidemiology report gives a thorough understanding of the heavy metal poisoning by including details such as disease definition, symptoms, causes, pathophysiology, and diagnosis.

Key Points: 
  • The Heavy Metal Poisoning epidemiology report gives a thorough understanding of the heavy metal poisoning by including details such as disease definition, symptoms, causes, pathophysiology, and diagnosis.
  • The heavy metal poisoning report and model provide an overview of the global trends of heavy metal poisoning in the seven major markets (7MM: US, France, Germany, Italy, Spain, UK, and Japan).
  • The heavy metal poisoning epidemiology report will allow the user to:
    Develop business strategies by understanding the trends shaping and driving the heavy metal poisoning market.
  • Quantify patient populations in the global heavy metal poisoning market to improve product design, pricing, and launch plans
    The Heavy Metal Poisoning Epidemiology Model developed by the publisher is easy to navigate, interactive with dashboards, and epidemiology based with transparent and consistent methodologies.