The providing and editing of the national rare diseases document is one of the most vital activities of the Rare Diseases Foundation, and in this regard, the Rare Diseases Foundation of Iran, with a lot of endeavor and follow-up, and with the participation and cooperation of the professors and expertise of the Foundation and other universities of medical sciences, prepared and compiled the National Document of Rare Diseases of Iran, which after being approved by the Secretariat of the Supreme Council of Health and Food Safety and the cooperation and collaboration of the honorable officials of that ministry and other related institutions, was finally approved by the honorable president and announced. Undoubtedly, the declaration of this document can be a very huge and effective step in determining the duties of the institutions and beneficiaries related to these patients, providing services to rare patients and their families, and solving the problems of these patient respectfully
The deputy of insurance and services of the iran health insurance organization declared :we cover one million and thousand patients in the fund for rare and hard treatment diseases.
In report of mehr news agency ,Mehdi rezaei,
According the insurance coverage of rare and hard treatment patients, announce : 1,600 billion tomans have been paid in the first 4 months of this year to cover the costs of rare and hard treatment patients .
Most of services are provided in the pharmaceutical, medical radiation and laboratory services, 75% of which are related to the pharmaceutical sector .
Rezaei added: 63 service packages have been prepared in this fund for these patients, who have received the most services in the rare and hard treatment patients fund, respectively , for cancer , MS, AND HEMOPHILIA
After adapting with her daughter’s disease for 13 years, Jen O’Connor as a rare diseases supporter, required the government to protect them. Her 18 years old daughter, Sydney, could not talk and walk during these years but now through a correct diagnosis and treatment, she enables to run and talk. Her mother’s attention caused the detection of this disease’s mystery which caused the diagnosis of 300 cases similar to her girl.
A 6-year-old girl named Kamiyah who every day experiences several spell where her entire body freezes up – her lungs, her muscles, everything.
With Kamiyah, we’re not necessarily looking for a diagnosis, as NIH ( National Inistitute of Health) has identified the gene mutation causing these spells. We’re trying to help Kamiyah and her family find more people with this condition, so they can learn about it and potentially find some relief.
Our son Oliver was struck down with Acute Necrotising Encephalopathy of Childhood (ANEC) this is a rare condition. On the 20th February 2016, Oliver was only three and a half years old. He was rushed into Accident and Emergency Department in Oxford because he had a seizure at home.
Sean Hepburn Ferrer, the eldest son of the late actress and humanitarian, Audrey Hepburn, is Rare Disease Day 2018 Ambassador. Sean Hepburn Ferrer was the previous Rare Disease Day Ambassador for 2014, 2015, 2016 and 2017. We are honoured that he is raising awareness for us on an international platform once again.Sean contributes to elevating the voice of rare disease patients to an international level and is a symbol for all patient organisations familiar with the struggle of making their voice heard.
You Know You’re An EB Mom When… & What I Need You To Know
I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa) mom yourself, and this is your truth, but to others, this may be a surprise, or even a revelation.
Here’s what my life it’s like from my prospective.
Dr. Robert M. Campbell, Jr. is Director of the Center for Thoracic Insufficiency Syndrome (CTIS) and an Attending Physician in the Division of Orthopaedic Surgery at Children’s Hospital of Philadelphia (CHOP). He is best known as the inventor of the Vertical Expandable Prosthetic Titanium Rib (VEPTR) device. Developed for the treatment of rare syndromes and disorders involving a malformed rib cage or missing ribs, this device was created by Dr. Campbell, then a pediatric orthopedist at CHRISTUS Santa Rosa Children’s Hospital in San Antonio, with the help of his colleague, Melvin Smith M.D. Drs. Campbell and Smith, directors of the Thoracic Institute at Santa Rosa, performed the first of many titanium rib implant surgeries in 1989. The device has been life-saving for many children.
He lived normally and he didn’t have any problems till the age of 5. One day when he was playing in the yard in his grandmother’s house he fainted suddenly. His mother cuddled him and kept calling his name “ Mohammad” and that was the beginning of their new life.