Cholangiocarcinoma Experts Find Hope in Newly Approved and Emerging Therapies
Dr. Reham Abdel-Wahab of the Cholangiocarcinoma Foundation says a raft of FDA-approved therapies and ongoing clinical trials will expand treatment options.
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Rare Disease Day 2022: Health Care Policy and Protections Still Lacking in Many States
NORD and other rare disease organizations around the world will celebrate Rare Disease Day on February 28, 2022, with most events being held virtually.
Using Technology to Boost Ethnic, Geographic Diversity in Clinical Trials
Eliminating geographic and ethnic bias in clinical trials for rare diseases is the goal of Jeeva Informatics, says founder and CEO Harsha K. Rajasimha, PhD.
Cholangiocarcinoma Foundation Helps Improve Odds for Patients With Rare Bile Duct Cancer
Melinda Bachini, 52, never intended to be a patient advocate for a disease few people have ever heard of, let alone pronounce. But a 2009 diagnosis of cholangiocarcinoma changed everything for the mother of 6.
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Israel Emerges as Global Powerhouse in Rare Disease Research
When it comes to rare disorders, Israel—a New Jersey-sized nation of 9.3 million that’s made headlines this year for its highly successful coronavirus vaccination campaign—is clearly an emerging powerhouse.
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NORD Recognizes Progress in Fight Against Rare Disease With 2021 Rare Impact Awards
Under COVID-19’s lingering shadow, the National Organization of Rare Disorders (NORD) has presented its 2021 Rare Impact Awards to 24 pharmaceutical firms, researchers, politicians, and nonprofit groups for their efforts over the past year on behalf of patients with such illnesses.
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FDA, CDC Urge COVID-19 Vaccines for Rare Disease Patients on NORD Webinar
As the super-contagious Delta variant of COVID-19 sweeps across the globe, driving up infection rates as well as deaths, top US health officials are urging everyone 12 and older—including the country’s 30 million or so rare disease patients—to get vaccinated quickly.
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