The disease is indeed rare. But they will not receive treatment because they are not exceptional.
The article discusses the challenges faced by patients with rare diseases in accessing treatment due to a lack of recognition and support.
Diabetes patient Kārlis Gailītis: "Give me the opportunity to live like a human, I will do the rest myself!"
Kārlis Gailītis, a type 1 diabetes patient, advocates for better healthcare access and an insulin pump to manage his condition, highlighting his struggles with eyesight due to the lack of medical support.
Hospital broke the law in withdrawing patient's life support over family's objections, court rules
A UK court has ruled that a hospital unlawfully withdrew life support from a patient without court approval, amid family objections.
Maranhão will transfer R$ 8.2 million per year to the health of Teresina for patient care
The Maranhão state government has signed an agreement to transfer R$ 8.2 million annually to support the healthcare system in Teresina, aimed at improving patient care and managing resources between states.
Discussions on the National Rare Disease Plan Continue in Lithuania
Lithuania is advancing discussions on a new National Rare Disease Plan aimed at addressing the challenges faced by patients with rare diseases and their families.
Rwanda: How a Former Patient Became a Trusted Face of Hospital Care
Maritha Mukantwari, a former patient, has become a key figure at La Croix du Sud Hospital in Kigali, providing support and guidance to patients with her friendly demeanor and efficient service.
Expensive Special Diet Strains the Wallets of Celiac Disease Patients
Celiac disease patients in Estonia must buy gluten-free food without state support, putting them at a disadvantage compared to patients in several other European countries who receive assistance.
Unimed Teresina launches a book based on the true story of a patient
Unimed Teresina has released a children's book about an 11-year-old boy's experience in the hospital, highlighting the importance of care and support during medical treatment.
The Popular Uprising in Defense of Lela Saves the Situation. She Feels Better and Wants to Continue Her Pregnancy
A patient named Lela, who faced severe complications during her pregnancy, received help after her situation was reported by OKO.press and FEDERA, allowing her to feel cared for by the medical staff.
‘From the Hospital to Home’... Establishing a Gwangwon-style Integrated Care System
Gwangwon Province is set to launch a new integrated care service that directly connects discharged patients with local municipalities for ongoing support from the end of this month.
Rare Diseases in Lithuania: 100 Thousand People Await Systemic Solutions
A recent event in Vilnius dedicated to Rare Diseases Day gathered patient organizations, specialists, and decision-makers to discuss systemic solutions for over 100,000 individuals affected by rare diseases in Lithuania.
Cardiacs are afraid of movement, they will learn to get rid of it in Třinec
A program in Třinec aims to help cardiac patients overcome their fear of movement.
Rare Diseases: More than 70% of Patients Turned to Savings or Asked for Family Help for Their Treatment
A significant number of patients with rare diseases in Argentina rely on personal savings or family assistance for their treatment costs.
Over 22 million euros allocated last year for the treatment of very rare conditions
Lithuania has allocated over 22 million euros for the treatment of very rare diseases, allowing 469 patients to receive necessary medical care without financial burden.
Accept what has happened and regain peace – calls to apply for oncology patient support programs
A Latvian patient shares her journey through cancer treatment and emphasizes the importance of support programs for psychological recovery.
Enrico Furlan, bioethicist: 'Now the little one has the right to a dignified end. Let's be close to the family'
Enrico Furlan emphasizes the importance of recognizing the dignity of every patient while discussing the delicate situation of a terminally ill two-year-old boy in Naples.
Outback patients struggling to pay cost of travelling for treatment
Residents in rural Queensland face significant financial burdens due to travel costs for medical treatment, prompting a government review of the Patient Travel Subsidy Scheme.
Considering renting accommodation to ease the burden on Landspítali
Iceland's authorities are contemplating the rental of additional housing to support Landspítali, the national hospital, amid increasing demand for patient services.
Chinese doctors save a patient with a pig liver connected outside the body
Chinese doctors successfully used a genetically modified pig liver to support a patient in critical condition while waiting for a transplant.
Eating Disorder Care in Stockholm: Better Statistics - Worse Care?
The article discusses changes in eating disorder care in Stockholm following the expiration of a contract with a private healthcare company, with patients expressing concerns over decreased support despite improvements in wait times for treatment.
[Healing and Companionship] Korean Merck Supports the Daily Lives of Cancer Patients and Families on World Cancer Day
Korean Merck Healthcare held an internal event to support cancer patients and their families, highlighting the importance of patient-centered care and participating in the 'United by Unique' campaign.
The Queen calls for a humanization of patient care in an era where empathy is 'questioned'
Queen Letizia emphasized the importance of providing comprehensive support for cancer patients during the AECC's World Cancer Day event, advocating for emotional, social, and legal assistance.