Sanford CoRDS

@sanfordcords

The CoRDS Registry was established to facilitate the establishment of rare disease registries for all rare diseases. ............................................ Collating diagnostic information of all enrolled patients offers the opportunity to perform a comparative analysis across many if not all diseases that will help researchers understand and ultimately develop effective treatments for patients. ............................................ Because the lack of information applies to many rare diseases, CoRDS was established to serve as a central resource of data for all rare diseases.

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A Diagnostic Odyssey

A graphic made by the CoRDS team! Posted in honor of 4/25 Undiagnosed Children's Awareness Day!

#rare diseases #undiagnosed #awareness #medicine #rare disease

Three mn euros for Stamina diverts to research

#rare diseases #rare disease #research funding #science

joanlocklives

#jonny lee miller #rare diseases #rare disease #advocacy #jonah's just begun

A 3 year-old toddler girl named Rylee, with a glowing eye, had her eyesight possibly saved from blindness by the Baptist Eye Clinic in Memphis, TN after she

Social media is a powerful tool these days. A picture posted on Facebook led this family to discover a rare condition affecting their daughter.

#rare disease #rare diseases #social media #medicine

For patients with a genetic disorder that results in extremely loose joints, surgery can be the last hope.

#ehlers danlos syndrome #rare disease #rare diseases #medicine

Draft plan launched to make the care sector better prepared for Rare Diseases

The UK makes strides toward providing better care for those with rare diseases.

#rare disease #rare diseases #medicine

Jeff and Deena Leider hope their son Jason, 7, can live beyond his teenage years. Jason Leider, 7, is afflicted with Hunter's syndrome, a disease that is causing his brain function to decline. He must maintain a certain IQ level to qualify for a federal trial in April for a drug that may arrest the deadly process. : page all

Hunter Disease is an extremely rare disease that affects two of this family's children. They hope to get one of them into a clinical trial to stave off some of the deterioration and symptoms.

#rare disease #rare diseases #clinical trial #medicine

krissmygrits

#cystic fibrosis #rare disease

stephydoll28

Chiari Malformation is a rare brain disease that causes headaches, fatigue, muscle weakness, and in some severe cases even paralysis. Only 1 in every 1,000 births has this disease. Currently there is no cure and those who do have Chiari go through surgeries and intense pain. In honor of rare disease day we need to raise awareness of this illness and the people who suffer from it. So that people like my friend Melissa can live a normal life without fear of the blinding pain, another surgery, or special medication.

#chiari malformation #rare disease #rare diseases

WASHINGTON â First the teenager survived a rare cancer. Then she wanted to study it, spurring a study that helped scientists find a weird gene flaw that might play a role in how the tumor strikes.

#rare disease #rare diseases #medicine #research

beyondthewoods-blog

Susannah Cahalan at TEDxWomen 2013: Brain On Fire author, her month of madness with rare brain disease

#rare disease

talledschick

#ehlers danlos syndrome #rare disease #rare diseases

cyclicallysick

Cyclic vomiting syndrome

"I never expected my little girl to have to fight a battle with a foe she couldn’t see," Tricia Andersen said. But when her daughter, Ali, was 13 months old, she started throwing up and couldn’t stop. For a day and a half, Tricia watched as Ali retched painfully and was admitted to the hospital for dehydration. When she was discharged the vomiting episodes continued — every three weeks like clockwork.

Ali Andersen has cyclic vomiting syndrome.

After a year of doctors’ visits, Ali was finally diagnosed with cyclic vomiting syndrome. It took the family another six months and a trip to another state to find a medication combination that would work to ease her symptoms. Even then, she was hospitalized half a dozen times by the time she was 9.

Ali is now 11 years old, and doesn’t let CVS dictate her life, Tricia says. She does robotics at school, plays basketball and participates in several track and field events, even though she has to wear an ice vest to keep her body temperature from getting too high.

"She gets involved with the activities that make her happy," her mom said. "[This] allows her to be a ‘normal’ kid despite having a chronic illness. Having CVS is a part of her life, not what controls it."

Read more about Ali’s story on iReport

#rare disease #cyclic vomiting syndrome #rare diseases

A mother who lost almost ten years of memories after she contracted a rare brain infection has pledged to raise awareness of the disease.

#rare disease #rare diseases #medicine #encephalitis

In India over 70 million people suffer from a plethora of rare diseases. Pegged at around 7,000 different kinds of conditions varying from rare forms of cancer, auto immune disorders, congenital anomalies and infections diseases the Foundation for Research on Rare Diseases and Disorders (ORDI) says

#rare diseases #rare disease #india #medicine

If not for the neck brace Melissa Palmer is wearing these days following a recent surgery to keep her spine straight, an outside observer might not know she was any different from any other suburban wife and mother. But what no one can see, and what not even she knew until few years ago, is that the 40-year-old Inverness woman has spent a lifetime battling a rare and potentially fatal genetic condition.

A family doctor rallied and advocated for Melissa Palmer to help her manage her rare disease.

#rare disease #rare diseases #pompe disease #patient advocacy #medicine

This family struggled to find the proper diagnosis for their daughter and once they did they struggled to get proper treatment for her rare condition- PANDAS.

#rare disease #rare diseases #patient advocacy #medicine

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