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The Alliance for Regenerative Medicine Fights for Better Cell, Gene Therapies

By

Larry Luxner

August 25, 2022

The Alliance for Regenerative Medicine aims to help in the development of safe and effective regenerative therapies that can benefit rare disease patients.

CCA Features, CF Features, Features, NMOSD Features, PAH Features, SM Features

An Inspirational Feat: Crossing Spain’s 500-Mile Camino de Santiago by Wheelchair

By

Larry Luxner

July 11, 2022

When 2 friends set out along Spain’s 500-mile Camino de Santiago, they didn’t know how many people they’d inspire with 3 little words: “I’ll Push You.”

AATD Features, CF Features, IPF Features, PAH Features

Aytu BioPharma’s Healight Device Could Help Treat Rare Pulmonary Diseases

By

Larry Luxner

May 26, 2022

Aytu BioPharma has developed an endotracheal respiratory catheter which its CEO says has “tremendous potential” in IPF, PAH, and other respiratory diseases.

CF Features, Features

COVID-19 Presents a Low Risk for Most Children With Cystic Fibrosis

By

Larry Luxner

March 22, 2022

Children with cystic fibrosis are at relatively low risk of serious complications from COVID-19, a study sponsored by the Cystic Fibrosis Foundation found.

CCA Features, CF Features, Features, LAL-D Features, LCFAOD Features, MG Features, SCD Features

Using Technology to Boost Ethnic, Geographic Diversity in Clinical Trials

By

Larry Luxner

October 27, 2021

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.

AATD Features, ALGS Features, CAD Features, CCA Features, CF Features, DMD Features, Features, GIST Features, HEM Features, IPF Features, LAL-D Features, LCFAOD Features, MG Features, NMOSD Features, PAH Features, Pompe Features, SCD Features, SMA Features

Israel Emerges as Global Powerhouse in Rare Disease Research

By

Larry Luxner

September 2, 2021

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.

AATD Features, ALGS Features, CAD Features, CCA Features, CF Features, DMD Features, Features, GIST Features, HEM Features, Human Interest, IPF Features, LAL-D Features, LCFAOD Features, MG Features, MTC Features, PAH Features

NORD Recognizes Progress in Fight Against Rare Disease With 2021 Rare Impact Awards

By

Larry Luxner

July 19, 2021

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.

CF Features

The Alliance for Regenerative Medicine Fights for Better Cell, Gene Therapies

An Inspirational Feat: Crossing Spain’s 500-Mile Camino de Santiago by Wheelchair

Aytu BioPharma’s Healight Device Could Help Treat Rare Pulmonary Diseases

Using Technology to Boost Ethnic, Geographic Diversity in Clinical Trials

Israel Emerges as Global Powerhouse in Rare Disease Research

NORD Recognizes Progress in Fight Against Rare Disease With 2021 Rare Impact Awards

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Examining the Links Between SARS-CoV-2 and Alpha-1 Antitrypsin Deficiency