Search results for Asean Declaration On Rare Diseases

Access to generic Risdiplam sought under policy for rare diseases for people with Spinal Muscular Atrophy

The recent availability of India-manufactured generic Risdiplam offers a practical pathway, patients write in an appeal to the PM; access to treatment is time sensitive, with delay...

Rare Disease Hunger Games

Rare Disease Hunger Games Anonymous (not verified) Wed, 04/22/2026 - 11:12 field_thread_url https://cafepharma.com/boards/threads/rare-disease-hunger-games...

Malaysia to champion people‑centred health reforms, global aid access at 79th World Health Assembly, says Dzulkefly

PUTRAJAYA, May 18 — Health Minister Datuk Seri Dr Dzulkefly Ahmad is in Geneva to lead the country’s delegat...

Rapid genomic testing helps 1,100 families worldwide target treatment for rare childhood disease

An international partnership designed to improve equality in access to genomic medicine for a rare disease has now provided potentially life-saving genetic testing for over 1,100 f...

Rare Disease Business As Usual

Rare Disease Business As Usual Anonymous (not verified) Sun, 05/10/2026 - 08:23 field_thread_url https://cafepharma.com/boards/threads/rare-disease-busines...

Rare disease advocates push for local insurance reforms, improved access to care

Odds are, most people have probably met someone with a rare disease — or even has one themself. While each condition on its own might be uncommon, altogether there are about 25-...

Father of rare disease patient fears losing 'second son'

Patients with rare diseases and their families travelled to Leinster House to call for action on access to new medicines.

WHO members adopt global resolution on bleeding disorder care

At the World Health Assembly (WHA), member states of the World Health Organization (WHO) unanimously adopted a resolution on Global Action to Advance Health Equity for People with...

Recordati Rare Disease

Recordati Rare Disease Anonymous (not verified) Sat, 04/18/2026 - 08:08 field_thread_url https://cafepharma.com/boards/threads/recordati-rare-disease.68363...

'Give us some hope' - Families seek access to rare disease drugs

Families, campaigners and clinicians are calling for more public money to be provided to pay for access to drugs which could help people with rare diseases.

Rare Disease Research, myTomorrows team up to help patients access trials

Clinical trial site network Rare Disease Research (RDR) is partnering with health tech company myTomorrows to increase trial visibility and support more referrals from community an...

Persons with SMA urge authorities to centrally procure Risdiplam to ensure better access

SMA is a genetic, progressive and life-limiting neuromuscular condition and Risdiplam from Swiss drugmaker Roche helps treat it

Sanofi and Wave post AATD updates in race to end genetic disease’s 40-year new treatment drought

Sanofi and Wave Life Sciences are using their time at the annual meeting of the American Thoracic Society in Orlando to share updated data for their next-gen attempts to treat a pr...

ASEAN leaders to create shared fuel reserve for future crises

Africa: Why The World Must Recognize NTDs as a Human Rights Issue

[allAfrica] During my years working in Malawi's health system - from clinician and public health officer to leading national public health programmes, and now as Minister of Health...

Dear Incoming FDA Leadership: I Lost My Brothers to a Rare Disease. Please Help My Son.

My 14-year-old son Ryu has a terminal rare disease. We were to travel from Texas to the District of Columbia on May 12 to attend a Senate hearing on the Food and Drug Administratio...

Global collaboration on Kawasaki disease key to reducing risk of serious heart conditions, say experts

International collaboration in research, diagnosis, and care is critical to reducing the risk of serious heart conditions for children with Kawasaki disease worldwide, according to...

Bio-IT World Celebrates 25 Years with Opening Plenary on Rare Disease Challenges and Opportunities

Breaking from the traditional plenary format, Bio-IT World Conference 2026 opened with intimate discussions on the personal, scientific, clinical, and policy challenges shaping rar...

Achieving inclusivity in clinical research

Published: 12 June 2025 This report, ‘Achieving inclusivity in clinical research’, has been jointly published by the Association of Medical Research Charities (AMRC) and Associati...

AI is detecting cancer earlier in Southeast Asia but our policies and capital have not caught up

Southeast Asia will see cancer cases rise by 70 per cent to 1.3 million new diagnoses annually by 2030. Cancer is already the region’s leading cause of death. Average treatment cos...

Malaysia, Singapore expand healthcare cooperation on food labelling, medical technology and health tourism

KUALA LUMPUR, May 20 — Malaysia and Singapore are strengthening strategic cooperation in healthcare, including foo...

ASEAN to ratify petroleum security deal, DTI chief says

MANILA — ASEAN is pushing forward the ratification of a framework agreement on petroleum security, the Philippine trade minister said on Thursday. “APSA, or the ASEAN Petroleum Sec...

FDA Issues Recommendations for the Development of Individualized Therapies for Patients With Ultra-Rare Diseases

As discussed previously (“New FDA Guidance Allows Biosimilar Applicants to Use Data From Outside the U.S. To Accelerate Their Approval in the U.S.”), the U.S. Food and Drug Adminis...

Asian Development Bank to mobilise $30 billion to help ASEAN countries withstand external shocks

Asian Development Bank to mobilise $30 billion to help ASEAN countries withstand external shocks