European Organisation for Rare Diseases

Cytokinetics Joins Global Initiative to Recognize International Rare Disease Day

Retrieved on: 
Wednesday, February 22, 2023
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SOUTH SAN FRANCISCO, Calif., Feb. 22, 2023 (GLOBE NEWSWIRE) -- Cytokinetics, Incorporated (Nasdaq: CYTK) today announced that it is joining the European Organisation for Rare Diseases (EURORDIS) and the National Organization for Rare Disorders (NORD) to recognize Rare Disease Day® on February 28, 2023.

Key Points: 
  • SOUTH SAN FRANCISCO, Calif., Feb. 22, 2023 (GLOBE NEWSWIRE) -- Cytokinetics, Incorporated (Nasdaq: CYTK) today announced that it is joining the European Organisation for Rare Diseases (EURORDIS) and the National Organization for Rare Disorders (NORD) to recognize Rare Disease Day® on February 28, 2023.
  • Rare Disease Day® is an international campaign elevating the awareness and public understanding of rare diseases.
  • The initiative spotlights the more than 300 million people worldwide living with a rare disease, and the awareness efforts focused on bringing them more equitable access to diagnosis, treatment, care and social opportunity.
  • “We take great pride in joining forces with EURORDIS, NORD and millions worldwide for Rare Disease Day, an opportunity to recognize and honor the courage and resilience of those living with rare diseases, while we advocate for improved access to diagnosis, treatment and care,” said Robert I. Blum, Cytokinetics’ President and Chief Executive Officer.

Travere Therapeutics Recognizes Rare Disease Day 2022 and Raises Awareness for People Living with Rare Disease

Retrieved on: 
Monday, February 28, 2022
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SAN DIEGO, Feb. 28, 2022 (GLOBE NEWSWIRE) -- Travere Therapeutics, Inc.(NASDAQ: TVTX) joins the National Organization for Rare Disorders (NORD), the European Organisation for Rare Diseases (EURORDIS), and the rare community worldwide in recognizing today as Rare Disease Day 2022.

Key Points: 
  • SAN DIEGO, Feb. 28, 2022 (GLOBE NEWSWIRE) -- Travere Therapeutics, Inc.(NASDAQ: TVTX) joins the National Organization for Rare Disorders (NORD), the European Organisation for Rare Diseases (EURORDIS), and the rare community worldwide in recognizing today as Rare Disease Day 2022.
  • On Rare Disease Day, and every other day of the year, we aim to amplify the stories and experiences of people living with rare disease, said Eric Dube, Ph.D., chief executive officer of Travere Therapeutics.
  • Travere Therapeutics honors Rare Disease Day with a program for its workforce featuring a panel of people sharing their experiences with the rare kidney disease IgA nephropathy.
  • Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008 and brings together millions of people in solidarity.

Acasti Pharma Celebrates Rare Disease Day

Retrieved on: 
Monday, February 28, 2022
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LAVAL, Qubec, Feb. 28, 2022 (GLOBE NEWSWIRE) -- Acasti Pharma Inc. (Acasti or the Company) (Nasdaq: ACST and TSX-V: ACST), today recognizes and celebrates Rare Disease Day (February 28), as established by the European Organisation for Rare Diseases.

Key Points: 
  • LAVAL, Qubec, Feb. 28, 2022 (GLOBE NEWSWIRE) -- Acasti Pharma Inc. (Acasti or the Company) (Nasdaq: ACST and TSX-V: ACST), today recognizes and celebrates Rare Disease Day (February 28), as established by the European Organisation for Rare Diseases.
  • Rare Disease Day is the globally coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
  • Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global and diverse but united in purpose.
  • Rare Disease Day is observed every year on 28 February (or 29 in leap years) the rarest day of the year.

Albireo Spotlights Global Patient Communities on Rare Disease Day

Retrieved on: 
Friday, February 26, 2021
Rare disease, European Organisation for Rare Diseases, Rare Disease Day, Children's Liver Disease Foundation, Liver disease, Organizations, Health, Branches of biology

BOSTON, Feb. 26, 2021 (GLOBE NEWSWIRE) -- Albireo Pharma, Inc.(Nasdaq: ALBO), a clinical-stage rare liver disease company developing novel bile acid modulators, joins the rare disease community in support of Rare Disease Day 2021.

Key Points: 
  • BOSTON, Feb. 26, 2021 (GLOBE NEWSWIRE) -- Albireo Pharma, Inc.(Nasdaq: ALBO), a clinical-stage rare liver disease company developing novel bile acid modulators, joins the rare disease community in support of Rare Disease Day 2021.
  • Established by EURORDIS, Rare Disease Day www.rarediseaseday.org aims to build broader awareness of the unique needs and challenges of patients and families affected by rare diseases.
  • On Rare Disease Day, the voices, experiences, struggles and milestones of these communities take center stage, said Alison Taylor, Chief Executive of Childrens Liver Disease Foundation (CLDF).
  • Albireo will be spotlighting rare patient communities and the critical needs of patients, caregivers and the medical community around the world.

Fortress Biotech Joins Global Movement to Raise Awareness for Rare Diseases and Supports Rare Disease Day®

Retrieved on: 
Friday, February 26, 2021
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Fortress Biotech stands with over 25 million Americans living with a rare disease and is a proud sponsor of the National Organization for Rare Disorders (NORD) 2021 Rare Disease Day activities.

Key Points: 
  • Fortress Biotech stands with over 25 million Americans living with a rare disease and is a proud sponsor of the National Organization for Rare Disorders (NORD) 2021 Rare Disease Day activities.
  • 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 U.S. 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.

Cytokinetics Joins Global Initiative to Recognize International Rare Disease Day

Retrieved on: 
Friday, February 26, 2021
European Organisation for Rare Diseases, Medicine, Rare disease, Articles, Rare Disease Day, Contents, National Organization for Rare Disorders, Disease, Rare diseases, RareConnect

SOUTH SAN FRANCISCO, Calif., Feb. 26, 2021 (GLOBE NEWSWIRE) -- Cytokinetics, Incorporated(Nasdaq: CYTK) today announced that on February 28 it is joining the European Organisation for Rare Diseases (EURORDIS) and the National Organization for Rare Disorders (NORD) to recognize Rare Disease Day, an international campaign elevating the awareness and public understanding of rare diseases.

Key Points: 
  • SOUTH SAN FRANCISCO, Calif., Feb. 26, 2021 (GLOBE NEWSWIRE) -- Cytokinetics, Incorporated(Nasdaq: CYTK) today announced that on February 28 it is joining the European Organisation for Rare Diseases (EURORDIS) and the National Organization for Rare Disorders (NORD) to recognize Rare Disease Day, an international campaign elevating the awareness and public understanding of rare diseases.
  • Rare Disease Day, which takes place every year on the last day in February, was established inEuropein 2008 by theEuropean Organisation for Rare Diseases(EURORDIS) and is now observed in more than 80 nations.
  • Inthe United States, Rare Disease Day is sponsored by theNational Organization for Rare Disorders(NORD), a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.
  • With over 6,000 rare diseases, 25 million Americans are living with a rare disease, but only 5 percent of these diseases have a treatment.

Taysha Gene Therapies Announces Support of Rare Disease Day 2021

Retrieved on: 
Friday, February 26, 2021
Science, Biotechnology, Research, Pharmaceutical, Health, Genetics, Philanthropy, Fund Raising, Branches of biology, Life sciences, Health sciences, Biotechnology, European Organisation for Rare Diseases, Rare disease, Rare Disease Day, Gene therapy, Therapy, National Organization for Rare Disorders

Taysha Gene Therapies, Inc. (Nasdaq: TSHA), a patient-centric, clinical-stage gene therapy company focused on developing and commercializing AAV-based gene therapies for the treatment of monogenic diseases of the CNS in both rare and large patient populations, today announced its support of Rare Disease Day and the launch of its #RareAlly initiative to recognize those in the rare disease community who inspire and motivate each other.

Key Points: 
  • Taysha Gene Therapies, Inc. (Nasdaq: TSHA), a patient-centric, clinical-stage gene therapy company focused on developing and commercializing AAV-based gene therapies for the treatment of monogenic diseases of the CNS in both rare and large patient populations, today announced its support of Rare Disease Day and the launch of its #RareAlly initiative to recognize those in the rare disease community who inspire and motivate each other.
  • For Rare Disease Day and every day, Taysha celebrates those allies in the rare disease community who inspire us, who challenge us to give and be our best, and who we lean on for support.
  • As part of Rare Disease Day activities, Taysha is raising funds through its #RareAlly photo submission campaign to support the rare disease community, and will host an all-employee event featuring a guest speaker from the UT Southwestern Gene Therapy Program and a screening of the One Shot to Live documentary series created by the Rare Village Foundation.
  • In recognition of the significant amount of people living with rare conditions, the European Organization for Rare Diseases (EURORDIS) and the National Organization for Rare Disorders in the U.S. (NORD) organized Rare Disease Day.

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

Retrieved on: 
Thursday, February 25, 2021
Medicine, Articles, European Organisation for Rare Diseases, Rare disease, Health, Global Genes, Rare Disease Day, Rare diseases, National Organization for Rare Disorders, Disease, RareConnect

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.

Takeda Receives Prestigious EURORDIS 2021 Black Pearl Award for Patient Engagement

Retrieved on: 
Thursday, February 18, 2021
Health, Clinical trials, Research, Pharmaceutical, Science, Biotechnology, European Organisation for Rare Diseases, Companies, Rare Disease Day, Rare disease, Takeda Pharmaceutical Company, Takeda, Economy of Japan, Organizations

Takeda Pharmaceutical Company Limited ( TSE:4502/NYSE:TAK ) (Takeda) Takeda has been announced the winner of the EURORDIS 2021 Award for Patient Engagement in recognition of the companys unwavering commitment to rare disease patients and its comprehensive partnerships with the rare disease patient community.

Key Points: 
  • Takeda Pharmaceutical Company Limited ( TSE:4502/NYSE:TAK ) (Takeda) Takeda has been announced the winner of the EURORDIS 2021 Award for Patient Engagement in recognition of the companys unwavering commitment to rare disease patients and its comprehensive partnerships with the rare disease patient community.
  • The annual EURORDIS Black Pearl awards ceremony is a celebration of achievements and exceptional work in this space and is held every February marking Rare Disease Day.
  • Giles Platford, President Europe and Canada, will receive the award on behalf of Takeda during the virtual awards ceremony on 24 February 2021.
  • As such, Takedas scope of patient engagement strives to cover the entire rare disease patient journey, from diagnosis through to patient access to therapy and innovative treatment support programs.

NORD Highlights New Era of Innovation and Public Health Awareness in Virtual 2020 Rare Diseases and Orphan Products Breakthrough Summit

Retrieved on: 
Friday, October 9, 2020
Rare disease, National Organization for Rare Disorders, Health in the United States, United States, European Organisation for Rare Diseases

WASHINGTON, Oct. 9, 2020 /PRNewswire/ -- On October 8 and 9, the National Organization for Rare Disorders (NORD) virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit , the first time the organization representing over 25 million Americans impacted by rare diseases has presented the conference exclusively online.

Key Points: 
  • WASHINGTON, Oct. 9, 2020 /PRNewswire/ -- On October 8 and 9, the National Organization for Rare Disorders (NORD) virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit , the first time the organization representing over 25 million Americans impacted by rare diseases has presented the conference exclusively online.
  • Each year the NORD Summit brings together participants spanning the rare community, including rare disease experts and leaders from patient advocacy groups, government, industry and academia to discuss the most current and critical topics related to rare diseases and orphan products.
  • To sign up to receive communications on the 2021 Rare Diseases and Orphan Products Breakthrough Summit, please click here .
  • The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases.