Thiard News@F4F

@newsen.bsky.social

1 week ago

InterScience Aims to Ensure Accurate Medical Information Reaches Everyone InterScience is committed to making accurate medical information widely accessible. Through its platform, Medicil, they aim to support patients with rare diseases.

InterScience Aims to Ensure Accurate Medical Information Reaches Everyone #Japan #Tokyo #Rare_Diseases #Interscience #Medicil

Thiard News@F4F

@newsen.bsky.social

1 week ago

Sobi Unveils Its Comprehensive Annual and Sustainability Report for 2025 Swedish Orphan Biovitrum AB presents its 2025 Annual and Sustainability Report, detailing progress in rare disease therapies and sustainable practices.

Sobi Unveils Its Comprehensive Annual and Sustainability Report for 2025 #Sustainability #Sweden #Stockholm #Sobi #Rare_Diseases

Thiard News@F4F

@newsen.bsky.social

1 week ago

Sobi's Comprehensive Annual and Sustainability Report for 2025 Highlights Growth and Commitment to Rare Diseases Swedish Orphan Biovitrum AB has released its 2025 Annual and Sustainability Report, showcasing achievements in innovation and patient care for rare diseases.

Sobi's Comprehensive Annual and Sustainability Report for 2025 Highlights Growth and Commitment to Rare Diseases #Sweden #Stockholm #Annual_Report #Sobi #Rare_Diseases

Thiard News@F4F

@newsen.bsky.social

2 weeks ago

NORD Strengthens Rare Disease Advocacy with New Leadership Appointments The National Organization for Rare Disorders announces key appointments to bolster its advocacy for over 30 million Americans with rare diseases. Michael Beard and Cara Tenenbaum join the team to drive policy improvements.

NORD Strengthens Rare Disease Advocacy with New Leadership Appointments #USA #Washington #Rare_Diseases #NORD #policy_leadership

Thiard News@F4F

@newsen.bsky.social

1 month ago

Mediaplanet Launches Nationwide Rare Disease Awareness Campaign Mediaplanet's new Rare Diseases campaign aims to raise awareness and drive innovation for over 300 million individuals affected by rare conditions, gathering leaders and advocates.

Mediaplanet Launches Nationwide Rare Disease Awareness Campaign #Rare_Diseases #Awareness_Campaign #Mediaplanet

Thiard News@F4F

@newsen.bsky.social

1 month ago

AOP Health Standardizes Veeva Industry Cloud Across All Business Areas for Enhanced Integration AOP Health has standardized its use of Veeva Industry Cloud to improve efficiencies across its operations, accelerating the delivery of essential therapies for patients with rare diseases.

AOP Health Standardizes Veeva Industry Cloud Across All Business Areas for Enhanced Integration #USA #Veeva_Systems #Pleasanton #Rare_Diseases #AOP_Health

Thiard News@F4F

@newsen.bsky.social

1 month ago

AOP Health Streamlines Operations Using Veeva Industry Cloud for Life Sciences AOP Health is implementing Veeva Industry Cloud to enhance global growth and streamline operations in rare disease therapies and critical care.

AOP Health Streamlines Operations Using Veeva Industry Cloud for Life Sciences #USA #Veeva_Systems #Pleasanton #Rare_Diseases #AOP_Health

Thiard News@F4F

@newsen.bsky.social

1 month ago

Andelyn Biosciences Launches Foundation to Assist Families Facing Rare Diseases Andelyn Biosciences has established the Andelyn Foundation, a nonprofit aimed at supporting families dealing with rare diseases through community fundraising and awareness initiatives.

Andelyn Biosciences Launches Foundation to Assist Families Facing Rare Diseases #United_States #Columbus #Rare_Diseases #Andelyn_Biosciences #Andelyn_Foundation

Thiard News@F4F

@newsen.bsky.social

1 month ago

The Surge to Save Newborns Coalition: Aiming to Standardize Newborn Screening Across States The newly launched Surge to Save Newborns coalition, supported by a fresh study, aims to eliminate the discrepancies in newborn screening across states, potentially saving lives.

The Surge to Save Newborns Coalition: Aiming to Standardize Newborn Screening Across States #United_States #Washington #Rare_Diseases #newborn_screening #Surge_to_Save

Thiard News@F4F

@newsen.bsky.social

1 month ago

Over 30 Million Americans Affected by Rare Diseases: A Call for Action The National Organization for Rare Disorders highlights the urgent need to address the plight of over 30 million Americans living with rare diseases, urging public support and awareness.

Over 30 Million Americans Affected by Rare Diseases: A Call for Action #United_States #Washington,_D.C. #Rare_Diseases #NORD #Health_Advocacy

Thiard News@F4F

@newsen.bsky.social

2 months ago

National Report Highlights Variability in Rare Disease Access Across States A recent report reveals stark differences in care access for rare disease patients across the U.S. NORD's findings urge policymakers to address these disparities for better healthcare outcomes.

National Report Highlights Variability in Rare Disease Access Across States #Healthcare_Access #Rare_Diseases #NORD

Thiard News@F4F

@newsen.bsky.social

2 months ago

NIH Director Dr. Jay Bhattacharya to Lead NORD Rare Disease Symposium for Innovative Solutions Join NIH Director Dr. Jay Bhattacharya at the NORD Rare Disease Symposium to discuss innovative solutions for accelerating treatment development for rare diseases.

NIH Director Dr. Jay Bhattacharya to Lead NORD Rare Disease Symposium for Innovative Solutions #United_States #Arlington #Rare_Diseases #NIH #NORD

Thiard News@F4F

@newsen.bsky.social

2 months ago

Health Union Launches New Digital Communities for Oncology and Rare Diseases to Enhance Patient Engagement Health Union enhances its community portfolio with new digital support platforms for cancer and rare diseases, fostering patient engagement.

Health Union Launches New Digital Communities for Oncology and Rare Diseases to Enhance Patient Engagement #USA #Philadelphia #oncology #Rare_Diseases #Health_Union

Thiard News@F4F

@newsen.bsky.social

3 months ago

n-Lorem and EspeRare Unite to Enhance Access to Rare Disease Therapies in Europe The n-Lorem Foundation and EspeRare are collaborating to improve access to individualized ASO therapies for patients with rare genetic disorders across Europe.

n-Lorem and EspeRare Unite to Enhance Access to Rare Disease Therapies in Europe #Switzerland #Rare_Diseases #Geneva #EspeRare #n-Lorem

Thiard News@F4F

@newsen.bsky.social

3 months ago

Veeva Systems and BioMarin Pharmaceutical Forge Strategic Partnership to Accelerate Therapeutics Development Veeva Systems and BioMarin Pharmaceutical have established a long-term partnership aimed at enhancing the efficiency of therapy development and commercialization processes for rare diseases.

Veeva Systems and BioMarin Pharmaceutical Forge Strategic Partnership to Accelerate Therapeutics Development #United_States #Veeva_Systems #Rare_Diseases #BioMarin_Pharmaceutical #Pleasanton,_San_Rafael

Thiard News@F4F

@newsen.bsky.social

4 months ago

Orphalan's Acquisition of Orphelia Pharma: A Leap Forward in Rare Disease Treatment Orphalan's acquisition of Orphelia Pharma enhances its commitment to innovative treatments for rare diseases, particularly in pediatrics.

Orphalan's Acquisition of Orphelia Pharma: A Leap Forward in Rare Disease Treatment #Paris #France #Rare_Diseases #Orphalan #Orphelia

Thiard News@F4F

@newsen.bsky.social

4 months ago

Kim Isenberg Joins NORD Board to Strengthen Advocacy for Rare Diseases The National Organization for Rare Disorders welcomes Kim Isenberg to its Board of Directors, aiming to enhance advocacy for those affected by rare diseases.

Kim Isenberg Joins NORD Board to Strengthen Advocacy for Rare Diseases #United_States #Rare_Diseases #NORD #Norwell #Kim_Isenberg

Thiard News@F4F

@newsen.bsky.social

4 months ago

NORD Expands Its Network with Seven New Centers for Rare Diseases Across the U.S. The National Organization for Rare Disorders has added seven new centers to its network in an effort to enhance research and care for rare diseases in America.

NORD Expands Its Network with Seven New Centers for Rare Diseases Across the U.S. #United_States #Rare_Diseases #NORD #Centers_of_Excellence #Norwell

Thiard News@F4F

@newsen.bsky.social

4 months ago

Orphan Drugs Market Set to Reach $486.51 Billion by 2032 Amidst Rare Disease Innovations The Orphan Drugs Market is projected to soar to $486.51 billion by 2032, driven by advancements in gene therapies and precision medicine focusing on rare diseases.

Orphan Drugs Market Set to Reach $486.51 Billion by 2032 Amidst Rare Disease Innovations #Rare_Diseases #gene_therapies #Orphan_Drugs #United_States_and_Japan #Austin,_Texas_and_Tokyo

Thiard News@F4F

@newsen.bsky.social

4 months ago

NORD Issues Request for Proposals to Establish New Patient Registries NORD seeks nonprofit organizations to establish two new patient registries via the IAMRARE platform, aiming to enhance patient care and data collection efforts.

NORD Issues Request for Proposals to Establish New Patient Registries #USA #Rare_Diseases #Danbury #NORD #IAMRARE

Thiard News@F4F

@newsen.bsky.social

5 months ago

NORD Launches an Innovative Mobile App for Rare Disease Advocacy and Research The National Organization for Rare Disorders introduces the IAMRARE mobile app, a vital tool enhancing participation in rare disease research, establishing a faster data collection process.

NORD Launches an Innovative Mobile App for Rare Disease Advocacy and Research #United_States #Rare_Diseases #Danbury #NORD #IAMRARE

Thiard News@F4F

@newsen.bsky.social

5 months ago

Orsini Unveils Comprehensive Pharmacy and Logistics Solution in Columbus, Ohio Orsini has launched an integrated specialty pharmacy and 3PL solution at its new Columbus facility, enhancing support for rare disease therapies across the nation.

Orsini Unveils Comprehensive Pharmacy and Logistics Solution in Columbus, Ohio #United_States #Columbus #Rare_Diseases #Specialty_Pharmacy #Orsini

Thiard News@F4F

@newsen.bsky.social

6 months ago

Pacific Northwest Research Institute Makes Progress in Rare Disease Research Amid Funding Challenges Despite funding uncertainties, Pacific Northwest Research Institute has published significant findings in rare genetic disease research, highlighting important advancements in patient care.

Pacific Northwest Research Institute Makes Progress in Rare Disease Research Amid Funding Challenges #United_States #Seattle #Rare_Diseases #Pacific_Northwest #genetic_research

Thiard News@F4F

@newsen.bsky.social

7 months ago

Inpharmus Expands Global Presence in Rare Diseases and Oncology to Become a Market Leader Inpharmus bolsters its role in healthcare through expertise in rare diseases and oncology, aiming for substantial revenue growth by 2030.

Inpharmus Expands Global Presence in Rare Diseases and Oncology to Become a Market Leader #Istanbul #oncology #Turkey #Rare_Diseases #Inpharmus

Thiard News@F4F

@newsen.bsky.social

7 months ago

Orsini and Paynela Join Forces to Enhance Access to Care for Rare Disease Patients Orsini collaborates with Paynela to expand financial assistance programs for patients with rare diseases, making therapies more accessible.

Orsini and Paynela Join Forces to Enhance Access to Care for Rare Disease Patients #United_States #Elk_Grove_Village #Rare_Diseases #Orsini #Paynela

Thiard News@F4F

@newsen.bsky.social

7 months ago

EQT Foundation Launches Grant Program for Rare Disease Research Innovations The EQT Foundation's new grant program invites innovative research proposals focused on rare diseases. It aims to impact patient care globally.

EQT Foundation Launches Grant Program for Rare Disease Research Innovations #Sweden #Stockholm #Rare_Diseases #EQT_Foundation #Breakthrough_Science

Thiard News@F4F

@newsen.bsky.social

7 months ago

NORD Launches Free Data Literacy Course for Rare Diseases Community Empowering Patients and Caregivers The National Organization for Rare Disorders has introduced a free online course to enhance data literacy for those affected by rare diseases, aiding informed health decisions.

NORD Launches Free Data Literacy Course for Rare Diseases Community Empowering Patients and Caregivers #USA #Rare_Diseases #Danbury #NORD #Data_Literacy

Thiard News@F4F

@newsen.bsky.social

7 months ago

Join the Movement: NORD's 2025 Summit Aims to Propel Rare Disease Innovation to New Heights The 2025 NORD Breakthrough Summit will gather thought leaders this October to shape the future of rare disease treatments and care. Be part of the change!

Join the Movement: NORD's 2025 Summit Aims to Propel Rare Disease Innovation to New Heights #Rare_Diseases #NORD #Breakthrough_Summit

Thiard News@F4F

@newsen.bsky.social

7 months ago

Citizen Health Secures $30 Million to Innovate Patient Advocacy with AI Technology Citizen Health announces a significant $30 million funding for developing AI advocates, enhancing healthcare experiences for patients with rare diseases.

Citizen Health Secures $30 Million to Innovate Patient Advocacy with AI Technology #United_States #San_Francisco #Rare_Diseases #Citizen_Health #AI_Advocate

Nafisa Jadavji, PhD, FAHA

@nafisajadavji.bsky.social

7 months ago

Happy to share data from the #JadavjiLab. A nice collaboration between us, Mitra Esfandiarei, Theresa Currier Thomas, and Tala Curry-Koski. We have expanded our research into #Rare_Diseases (MarfanSyndrome) to investigate the impact of vascular disease on neurodegeneration in the brain!