Aadcnews.com

Universal health coverage sought at UN for AADC deficiency, rare

WEBThe World Health Organization, the World Bank, the Office of the UN High Commissioner for Human Rights, and the NGO Committee for Rare Diseases also …

Actived: 7 days ago

URL: https://aadcnews.com/news/universal-health-coverage-sought-un-aadc-other-rare-diseases/

PTC Develops Tools for AADC Deficiency Patients to Assess

WEBDeveloping health utilities involves two main steps: defining a set of health states and disease aspects of interest, and valuing them to determine their weight. …

Category: Health Go Health

NICE: AADC deficiency therapy Upstaza to be provided at low, no

WEBThe favorable decision from NICE’s final draft guidance makes Upstaza the first disease-modifying treatment for AADC deficiency added to the list of medications …

Category: Health Go Health

Importance of Advocacy for AADC Deficiency AADC News

WEBHealth advocacy goals include patient-centered care, and greater reliance on the patient perspective in healthcare delivery and design. On the policy front, …

Category: Health Go Health

NORD Cheers New US ‘Inflation Reduction Act’ for Healthcare

WEBAccording to NORD, a U.S.-based nonprofit that advocates for people with rare diseases, the new law will support those who struggle to pay for medications.. …

Category: Health Go Health

Telehealth 'Helpful' Option to In-person Care, Rare Disease

WEBTelehealth may offer advantages for people with rare diseases, as the number of expert health providers for a given rare disease is often limited, meaning …

Category: Health Go Health

What's a Dystonic Crisis with AADC Deficiency, and How to Deal

WEBA dystonic crisis is an episode in which the muscles contract very strongly, and in patterns, randomly, or as a continuous cramp. The severity may make patients …

Category: Health Go Health

Coalition Will Address Racial Disparities in Rare Disease …

WEBThe BWHI and a steering committee made up of rare disease experts, health and diversity advocates, and industry leaders head the Rare Disease Diversity …

Category: Health Go Health

Medical Alert Cards for AADC Deficiency

WEBTeleRare Health launches virtual clinic for US rare disease patients; Learning from failure sets me up for future success as a parent; Mississippi establishes …

Category: Health Go Health

Rare Disease Diversity Coalition Awards $600K to Combat Disparities

WEBThe Black Women’s Health Imperative — a national, nonprofit organization focused on advancing health equity and social justice for Black women — launched the …

Category: Health Go Health

All You Need to Know About Vitamin B6 and AADC Deficiency

WEBIn AADC deficiency, the activity of the AADC enzyme is low. As a result, the brain cannot produce enough of the neurotransmitters it needs, leading to disease …

Category: Health Go Health

How Will AADC Deficiency Affect My Child’s Life Expectancy

WEBMany patients with AADC deficiency experience spells or spasmodic attacks that can last for hours. These spells may cause damage that could affect how many …

Category: Health Go Health

About iNTD and How It Can Benefit Patients With AADC …

WEBThe iNTD was founded in 2013 with the aim of improving the care provided to patients with rare neurological diseases. The group works to increase clinical and …

Category: Health Go Health

How Could Gene Therapy Help AADC Deficiency Patients

WEBGene therapy — replacing a faulty gene in the body — may hold the answers to the permanent treatment of aromatic l-amino acid decarboxylase (AADC) …

Category: Health Go Health

Lawmakers Must Be Educated About AADC, Other Rare Disease: …

WEB“Engaging in health policy can be confusing, feel overwhelming, and at times appear quite tedious,” said Karin Hoelzer, NORD’s director of policy and regulatory …

Category: Health Go Health

Apply Now for 2022 RARE Meet-Ups Grants for AADC, Other …

WEBby Vanda Pinto, PhD January 5, 2022. Global Genes, a worldwide non-profit, is seeking to support in-person meet-ups that provide access to educational resources and …

Category: Health Go Health

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

WEBSeveral countries use the classifications, maintained by the World Health Organization, to document patients’ medical conditions for epidemiology, research, and …

Category: Medical Go Health

PicnicHealth acquires AllStripes, adding rare diseases to data

WEBBeing diagnosed with a disease, especially a rare disease, often entails the need for different consultations, and a panoply of exams. Maintaining this information in …

Category: Health Go Health

Phreesia's MediFind acquisition can help AADC deficiency patients

WEBMediFind’s online platform is designed to help patients make faster and more informed decisions by connecting them with leading experts, health systems, healthcare …

Category: Health Go Health

NORD to host 'Latino/a/x Listening Sessions' in US on rare disease

WEBThe National Organization for Rare Disorders (NORD) is seeking to address health disparities in the rare disease community in the U.S. with the launch of new …

Category: Health Go Health

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