Workshop Presented Overwhelming Scientific Evidence to Support CSF-HS as a Primary Biomarker in Neuropathic MPS Disorders

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Systemic Sclerosis

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Neurofibromatosis

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Epidermolysis Bullosa

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Idiopathic Hypersomnia

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With APDS

Former IPM.ai executive to drive data and analytics product strategy, development, and commercialization.

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Rett Syndrome

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Immunoglobulin A Nephropathy

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Acid Sphingomyelinase Deficiency

The highly sought-after digital marketing and PR agency was recently accepted into the rare360, Rare Advocacy Movement (RAM) program.

Ambit to showcase its prevalence projection approach, co-developed with Praxis, for rare developmental and epileptic encephalopathies (DEEs) as a Platform Presentation at this year's annual Child Neurology Society meeting

Sickle cell community leaders gather annually to convene the General Assembly of Patients, Caregivers, and Community-Based Organizations to identify and develop national community priorities; host expert advocacy and capacity-building training workshops; and provide medical, research, and legislative updates to leaders in the sickle cell space.

Rare Disease Caregivers Receive Mental Health Boost

PH-ILD is a rare, serious, and progressive illness without an approved treatment in Europe and many other parts of the world

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Cold Agglutinin Disease

Friendly Community Walks to Advance Awareness & Accelerate Research for Myelodysplastic Syndromes - a Rare Blood Cancer

Pilot program brings genetic tools and education to patients searching for answers tied to their chronic medical conditions in Taiwan, Mexico, Argentina, Brazil, Turkey, and Russia

This is the third U.S. patent awarded to GBS's disease-specific Cannabinoid-Containing Complex Mixtures (CCCM™), which further validates GB Sciences' drug discovery platform and strengthens its intellectual property patent portfolio

Copay Assistance From the Assistance Fund Now Available for Eligible People Living With Acromegaly

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Tumor-Induced Osteomalacia

Financial Assistance From The Assistance Fund Now Available for Eligible People Living With Neurotrophic Keratitis

An Event Celebrating the Next Generation of All-Star Researchers Who Are Working on Breakthrough Treatments and Cures for Rare Diseases

Rare Disease Patients will receive Whole Genome Sequencing with Rare Disease Reports for $299 (€289). Patient Groups are encouraged to contact Dante Labs to develop personalized reports for their members (ex. Epilepsy Report for Epilepsy Groups).

$450,000 Award from Chan Zuckerberg Initiative is Part of Rare As One Project Investing $13.5 Million to Drive Progress Against Rare Diseases

Celebrating success across life sciences

Small nonprofit run by parent volunteers seeking to make a big impact and save their children

The award is based on outstanding 5-star online reviews from members of the MSA community. The MSA Coalition has now earned this seal of approval in four consecutive years.

ZibdyHealth is the first health application to integrate clinical and genomic data, making pharmacogenomics data instantly much more useful.

Patient Advocate and International Executive Director Lara Bloom to screen inspiring documentary, "Issues with my Tissues," to empower patients, families, and raise awareness for EDS and associated disorders

This clinical trials-related webinar will provide background on heavy menstrual bleeding (HMB) and discuss HMB trials from the PI and patient perspectives

Achieving Orphan Drug Designation is a significant step enabling your product to be licensed faster, in a cost-efficient manner, and achieve market exclusivity for 10 years.

Meeting to take place on Friday, April 6, 2018.

Initiates Galactosemia Research Collaboration with Emory University School of Medicine