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CEDR Accelerating Rare Disease Cures (ARC) Program is a new program approved by the U.S. Food and Drug Administration, designed to provide strategic advice and coordination of the organization’s rare disease activities to speed up and improve the development of safe and effective treatments for ...#rarediseases

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Accelerating Rare Disease Treatments

The FDA, NORD and the Critical Path Institute have created a pathway for Accelerating Rare Disease Drug Development.

teachrare.org

Fourteen-year-old Tess Bigelow has a rare gene mutation that has inspired research to find potential treatments for #haofountainsyndrome. The family also created the Foundation for USP7-Related Diseases. "You don't have a diagnosis? Maybe you belong with us. And one by one, we have found ...families that way."

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Falmouth couple searching for answers to daughter's rare disease, connect with other patients worldwide

Fourteen-year-old Tess Bigelow has a rare gene mutation that has inspired research to find potential treatments.

www.newscentermaine.com

#PEMF, or Pulsed Electromagnetic Fields, is a technology that uses low-frequency pulsed magnetic fields to stimulate the cells energy and in turn, promote cell function and recovery. When the body is fighting off infection, or trying to repair itself from injury, it’s often the case that cells ...simply do not have enough energy to effectively perform these tasks. This is where PEMF technology can help as the electromagnetic pulses that penetrate the body help:

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The benefits of PEMF map for rare disease families

PEMF has research proven results that could help rare disease familieis.

teachrare.org

Jonathan Kowalske from Component Brewing Company was driven by his son Mac’s diagnosis with a #raredisease. He decided to put his skills into creating change 🍺 He partnered with the National Organization for Rare Disorders, Inc. (NORD) to create #ZebraHop beer to shed light on the struggles ...faced by those with #rarediseases, encourage inclusion, and support treatments 🦓 Zebra Hop beer stands as a testament to the power of unity, illustrating how the craft of brewing can be harnessed to drive meaningful change.

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A rare beer that will raise money and support research for treatments for rare diseases.

The Collaborative Spirit Jonathan Kowalske, driven by his son Mac’s diagnosis, partnered with NORD, a national steward in the rare disease ...

teachrare.org

San Diego Union-Tribune Opinion article on #raredisease highlights why we should consider a new name. Rare diseases may cause some to dismiss them under the assumption that they only affect a small population and that other diseases should take precedence. However, this group affects 30 million ...Americans. The innovation and treatment in our @Rare Disease Day community are providing treatments for other diseases.

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Opinion: Rare diseases affect 30 million Americans. These are the challenges to find their cure.

Patients with rare diseases are frequently misdiagnosed or undiagnosed. On average, they wait nine years to finally receive an accurate diagnosis.

www.sandiegouniontribune.com

@goodshepherdthailand is a wonderful organization we love to support. They empower women, educate the less fortunate, and care for orphans. The greatest gift you can give is for someone to learn, be loved, and become independent.

@goodshepherdthailand is a wonderful organization we love to support. They empower women, educate the less fortunate, and care for orphans. The greatest gift you can give is for someone to learn, be loved, and become independent.

Dude Sutton was diagnosed with 4H Leukodystrophy POLR3B in April 2022, a condition that affects only four known children in the UK and targets the nervous system, gradually robbing Dude of his ability to walk, talk, hear, eat, and perform basic tasks. But the family is still fighting. Navigating ...bureaucracy and borders to get their son treatment.

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Plymouth family faces heartbreaking diagnosis of rare disease in five-year-old son

Dude has a condition which affects only four known children in the UK

www.themoorlander.co.uk

Thank you for being so supportive of our first #childrensbook. More than 100 books made it into homes! More importantly, we donated several copies to schools, libraries, hospitals, and clinics! If you enjoyed the book, please consider leaving a review! 📖 You would make Prof. Hong proud 🦊

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Prof. Hong Explores AADC Deficiency (The Rare Journey Series)

Prof. Hong Explores AADC Deficiency (The Rare Journey Series)

www.amazon.com

Hydrogen water is regular water with hydrogen gas added to it. According to some resources, adding hydrogen gas to the water increases its anti-inflammatory and antioxidant properties. It’s been touted for increasing energy, slowing aging, and improving muscle recovery.

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Hydrogen Water or Structure Water, What is it and are there benefits?

Hydrogen water and structured water is gaining attention by some users, especially compared to tap water.

teachrare.org