Rare Disease Research Center

Feb 25,2021

Our Newsletter - Winter 2021 | Vol. 2

The official Newsletter of Rare Disease Research, LLC

Feb 05,2021

Celebrating Rare Disease Day with Jett Foundation

Friday, February 26, 2021 | 2:00-3:30 PM ET

Feb 03,2021

Our Newsletter - Winter 2021 | Vol. 1

The official Newsletter of Rare Disease Research, LLC

Jan 22,2021

Support Local Artist Living with DMD

We invite you to support one of our patients with his fundraiser campaign.

Dec 01,2020

RDR Investigator-Sponsored Trial Treats First Patient

We announce the enrollment of the first patient in our Investigator-Sponsored Trial for boys with Duchenne muscular dystrophy.

Oct 05,2020

Clinical study for the treatment of Dravet Syndrome

Clinical study for the treatment of Dravet Syndrome available at Rare Disease Research

Aug 19,2020

Clinical Study for the treatment of Dyskinesia in Cerebral Palsy (DCP)

Clinical study for the treatment of Dyskinesia in Cerebral Palsy available at Rare Disease Research.

Aug 18,2020

Clinical Study for patients with Metachromatic Leukodystrophy (MLD)

Clinical Study for patients with Tourette Syndrome available at Rare Disease Research.

Jul 22,2020

Clinical Study for patients with Tourette Syndrome

Clinical Study for patients with Tourette Syndrome available at Rare Disease Research.

May 28,2020

Clinical Study for patients with Myasthenia Gravis

Clinical Study for patients with Myasthenia Gravis available at Rare Disease Research.

Apr 29,2020

Supporting Our Community: PPMD

Make your gift today so that PPMD can maintain their commitment to research, care, and advocacy in the face of the most challenging time we’ve ever experienced.

Apr 13,2020

Supporting Our Community: Muscular Dystrophy Association

In the words of one of our patients, Ethan LyBrand, "Through the good times and bad, the Muscular Dystrophy Association helps kids like me."

Mar 17,2020

Safety Policy for Infection Control

RDR is closely monitoring the ongoing Coronavirus disease pandemic (2019). As the current situation continues to change, our utmost priority is the health and safety of RDR staff, patients, and their families.

Mar 01,2020

Parent Project Muscular Dystrophy (PPMD)

Saturday, March 14, 2020 | Join for a FREE all-day meeting on Duchenne care, comprehensive research updates, and advocacy opportunities – breakfast and lunch are included!

Mar 01,2020

MG Walk Myasthenia Gravis Foundation Of America

Saturday, March 14, 2020 | Atlanta 2020 MG Walk. A world without MG. Come together to support the MG Community. Register to enter the fight against MG now!

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About Rare Diseases

In the United States, a rare disease is defined as disease that affects less than 200,000 people. With 7,000 known rare diseases affecting 30 million Americans and an estimated 350 million people worldwide. Of those statistics, about 75% of rare diseases are children, and about 30% of patients with rare diseases will not live past the age of 5.

In 1983, the FDA approved The Orphan Drug Act which gives incentives to companies that work to develop treatments for rare diseases. Since then, there have been nearly 350 treatments approved for various rare diseases.

7000

Rare Diseases

30 Millions

Affected Americans

400

Approved Treatments

CURRENT TRIALS ACTIVE AT RARE DISEASE RESEARCH

You or your child’s participation in our research is voluntary, and you are free to withdraw at any time. There will be no penalty or loss of benefits to which are you are otherwise entitled. We may be able to compensate you for your time and travel. Please do not hesitate to call us or send a message. We'll be happy to answer your questions and tell you more about our research.

Our Active Trials