Skip to main content

Latest News

Establishing Evidence-based Guidelines for Diagnosis and Management of Liver Disease in Protoporphyrias

A group of clinicians from the Porphyrias Consortium have developed new guidelines for the diagnosis and management of liver disease in protoporphyrias. The guidelines,

Establishing Evidence-based Guidelines for Diagnosis and Management of Liver Disease in Protoporphyrias

Rare Research Report: September 2023

September 19 2023

Rare Research Report logo

Join RDCRN at Rare Disease Day at NIH on February 28

February 21 2023

Rare Disease Day at NIH. February 28, 2023. #RDDNIH.

Senior Researcher Spotlight: Mohamed Kazamel Investigates Autonomic Neuropathy in the Porphyrias

January 10 2023

Headshot of Mohamed Kazamel, MD

Training Program for Clinical Research in Rare Disease Launches New Session

November 9 2022

Screenshot from a presentation on the Rare Diseases Research R25 Curriculum Grant

Rare Research Report: November 2022

November 7 2022

Rare Research Report logo

Predicting Drugs and Chemicals that May Induce Porphyric Attacks in Patients with Acute Hepatic Porphyrias and More: RDCRN Research Roundup

May 16 2022

Laboratory technician looks through a microscope in a medical laboratory

Study Finds ABCB6 Genotype Does Not Correlate with Disease Severity in Porphyria Phenotype and More: RDCRN Research Roundup

April 26 2022

Two researchers in the lab looking at a tablet

RDCRN Launches Contact Registry to Connect Patients, Researchers and Advance Rare Disease Research

March 14 2022

Three icons featuring a trio of silhouettes, a chemistry flask and stethoscope, and a contact card appear next to the text, Join Our Contact Registry - Learn about opportunities to participate in our research, receive information about our work, connect with our consortia and patient advocacy groups. rdcrn.org/registry appears next to the Rare Diseases Clinical Research Network logo