Rare Disease Day 2010 Staggering millions of people worldwide are impacted by rare diseases. Join the global flight! This is the Hungarian “reincarnation” of the film of AddiCassiFund for public summons. Milliónyi embert érintenek az un. “ritka betegségek”, amik nem is olyan ritkák, hiszen oly sokféle van bel?lük! Támogassa részvételével is a RIROSZ rendezvényét!

Terkel is President of EURORDIS and was a participant at the 5th European Conference on Rare Diseases (ECRD) Krakow, Poland 2010

Dying For Help is a feature length documentary chronicling the battles facing patients with rare diseases, who must fight for the life saving therapies they desperately need. The Film is Written and Directed by Mike Walter, who made the landmark film Breaking News, Breaking Down, an official selection of the Cannes Independent Film Festival and is in the Short Film Corner in the FESTIVAL DE CANNES. The film has won 7 awards, and was selected as one of the best documentary shorts for 2009 by Moving Pictures Magazine. To learn more about the documentary go to www.dyingforhelp.com.

I have been with my boyfriend for almost 2 years and we lost 2 kids together.
For the 1st miscarriage he did not take me to the hospital my grandmother had to and he could not go cause he had to go to work in the morning. I was there till 3 am
while he was asleep.
Yesterday I got a abortion because I was diagnosed with a rare disease called Toxoplasmosis because the baby will come out hanicapped.Than he missed work for no reason stayed at his sister’s and went to go play cards with his brother in law while I was sedated and out of he did not see me at all that day . what should I do with this Guy any help?
This is what my whole family is telling me.
I try to talk to him but he doesn’t want to hear what I have to say
He lost 1 kid with his ex of 4 yrs but he not be there for me
He said that if I was giving birth that he would really be there for me
I’m really depressed I have no friends all I have is him and my family.

CheckOrphan NewsFlash for Tuesday, November 17, 2009 – breaking news about rare diseases, orphan diseases, orphan drugs, and neglected diseases. Today’s broadcast highlights topics about: Burnham Institute, University of British Columbia, University of California San Diego, Huntington’s disease, Alzheimer’s disease, Memantine, Committee for Orphan Medicinal Products, IBsolvMIR, TikoMed AB, diabetes, European Medicines Agency, APG101, Apogenix, Glioblastoma multifome, University of Pennsylvania, antioxidant, broccoli, cauliflower, inflammation-based disorder, cystic fibrosis, diabetes, heart disease, neurodegeneration, Myeloma UK, myeloma, University of Leeds www.checkorphan.org http www.myeloma.org.uk

Created on April 27, 2010 using FlipShare.

Prof. Antonios Trakatelis, MEP, Greece addressing the European Rare Disease Organisation’s Annual Membership meeting in Athens in May 2009. The meeting was themed : No Rare Disease policy without patients

Hyperthyroidism is a medical condition in which the thyroid gland produces too much thyroid hormone (called T3 and T4). It controls your metabolism, which is how your body turns food into energy. Hyperthyroidism can significantly accelerate your body’s metabolism, causing sudden weight loss, a rapid or irregular heartbeat, sweating, and nervousness or irritability. It also affects your heart, muscles, bones, and cholesterol.

Other rare causes include excess dietary iodine consumption, abuse of thyroid hormone medication when patients overdose on thyroid hormone pills (either accidentally or purposefully because they think it will help them lose weight – a fallacy because taking too much thyroid hormone can be dangerous and life threatening), overactive metastatic thyroid cancer, or rare diseases of the ovary or testicles that can cause the thyroid to be over-stimulated. Or you may have no symptoms at all. Your doctor may discover that you have hyperthyroidism while doing a test for another reason. Several treatment options are available if you have hyperthyroidism. Doctors use anti-thyroid medications and radioactive iodine to slow the production of thyroid hormones. Although hyperthyroidism can be fatal if it’s ignored, most people respond well once hyperthyroidism is diagnosed and treated.

Causes of Hyperthyroidism

The common Causes of Hyperthyroidism:

The body recognizes the thyroid antigens as foreign, and a chronic immune reaction ensues, resulting in lymphocytic infiltration of the gland and progressive destruction of functional thyroid tissue.

Drugs such as amiodarone, interferon alpha, thalidomide, and stavudine have also been associated with primary hypothyroidism.

One such medication is lithium, which is used to treat certain psychiatric disorders. If you’re taking medication, ask your doctor about its effect on your thyroid gland.

Other types of ‘thyroiditis’ (thyroid inflammation) caused by infection or other rare conditions.

Failure of the pituitary gland to secrete a hormone to stimulate the thyroid gland ( secondary hypothyroidism ) is a less common cause of hypothyroidism.

The most common cause of hypothyroidism is Hashimoto’s thyroiditis, a disease of the thyroid gland where the body’s immune system attacks the gland.

Radiation used to treat cancers of the head and neck can affect your thyroid gland and may lead to hypothyroidism.

Symptoms of Hyperthyroidism

Some Symptoms of Hyperthyroidism:

Fatigue

Weakness

Increased appetite

Constipation

Increased sweating

Inability to tolerate cold.

Heat intolerance

Cold skin.

Weight loss

Muscle cramps

Restlessness

Menstrual irregularities in women

Slow body movements.

Treatment of Hyperthyroidism

Myxedema coma is a medical emergency that occurs when the body’s level of thyroid hormones becomes extremely low.

If a serious illness or infection triggered your hypothyroidism, your thyroid function most likely will return to normal when you recover.

After replacement therapy has begun, report any symptoms of increased thyroid activity ( hyperthyroidism ) such as restlessness, rapid weight loss, and sweating.

Surgery is indicated for large goiters that compromise tracheoesophageal function; surgery is rarely needed in patients with hypothyroidism and is more common in the treatment of hyperthyroidism.

If you have mild (subclinical) hypothyroidism , you may not need treatment but should be watched for signs of worsening hypothyroidism current research does not provide clear evidence to support treatment, and many health professionals disagree about whether mild hypothyroidism should be treated.

Hypothyroidism in pregnancy is associated with preeclampsia, anemia, postpartum hemorrhage, cardiac ventricular dysfunction, spontaneous abortion, low birthweight, impaired cognitive development, and fetal mortality even mild disease may be associated with adverse affects for offspring.

Sometimes hypothyroidism is a temporary condition in older children. (This is not so for children who are born with an underactive thyroid.

CheckOrphan NewsFlash for Tuesday, October 27, 2009 – breaking news about rare diseases, orphan diseases, orphan drugs, and neglected diseases. Today’s broadcast highlights topics about: Leber’s Congenital Amaurosis, Epidermolysis Bullosa or EB, gene therapy, Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Canada, Pulmonary arterial hypertension, PAH, University of California San Diego, multiple sclerosis or MS, University of Buffalo, Leishmania donovani parasite, INRS, macrophages, Visceral Leishmaniasis

Some vaccines are cultured on neoplastic (aka cancerous) cell lines, which DO cause cancer in certain strains of mice. What’s even scarier is that the vaccines (ie Varivax, MMR) have NEVER BEEN TESTED FOR ABILITY TO CAUSE CANCER. You might want to ask yourself WHY have they never been tested? Is this a risk you really want for at most partial and/or temporary protection from childhood diseases such as: -chickenpox, which is admitted to be a benign illness even by the manufacturer of Varivax, or -measles, mumps and rubella, which have become rare diseases and are admitted by the CDC to rarely cause complications? I’M SURE SOME PHARMA SHILLS WILL LAY INTO ME FOR PUTTING THIS VIDEO UP, BUT FOR ANYONE READING THIS, PLEASE CHECK THE SOURCES YOURSELVES, EVERYTHING I SAY IN THIS VIDEO IS TRUE. HeLa cells, immortal cell lines, cell line contamination and cancer: curezone.com Information from FDA on immortal (neoplastic) cell lines, safety and testing www.fda.gov HeLa cells and contamination: arpa.allenpress.com While lab culturing may indicate that so called immortal cells are not immediately changing to overt tumor cells, it is now well known in the scientific community that after these cells have been repeatedly cultured a certain number of times, something causes them to convert to a cancerous state. Normal embryo cells presumably represent a state in development which is genetically unstable, rendering them considerably more susceptible to malignant transformation.[76] When …