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News Links

Title Category News Date Link
UPCOMING EVENT: The Amyloidosis Foundation's Annual 'Run for Your Life' webpage 2018/10/13
UPCOMING VIRTUAL EVENT: The 2018 Rare Fair webpage 2018/09/28
Developing RNA Medicines for Rare Genetic Diseases article 2018/09/11
How a Collaborative Ecosystem is Driving the Development of Successful Therapies in Rare Disease Research article 2018/09/11
Cystinosis: Firelight Fund to help local family as child battles rare disease article 2018/09/11
NGLY1 Mutation: A Battle Plan for a War on Rare Diseases article 2018/09/10
Lack of treatment options for rare diseases prompts call for change article 2018/09/10
Ehlers-Danlos Syndrome: Madera boy with rare disease using YouTube to raise awareness article 2018/09/06
Med student uses 'Zebra Alphabet' to bring awareness to rare diseases article 2018/09/03
Fanconi Anemia: Jimbo Fisher spreads awareness of son's blood disease through nonprofit article 2018/08/31
Epidermolysis Bullosa: 'My skin tears and blisters at the slightest touch, but it won't stop me from modelling' article 2018/08/30
Spinal Muscular Atrophy: 4-H Competitor with rare disease inspires others article 2018/08/27
Guillain-Barre Syndrome: What we know about the disease Travis Frederick is fighting article 2018/08/25
Dravet Syndrome: Community rallies around 3-year old battling rare disorder article 2018/08/25
Biallelic HMBS Deficiency: 'Kure 4 Kam': Parents navigate medical maze so 1-year-old son might withstand rare disease article 2018/08/24
Hereditary Angioedema: Shire wins FDA approval for potential blockbuster rare disease drug article 2018/08/24
Batten Disease: Norfolk Tides help Virginia Beach teen with rare disease article 2018/08/21
With $3m in funding, tech firm looks to drive drug development using EHR data article 2018/08/21
Acute Necrotizing Encephalopathy: Moree community supports two-year-old Paige Thomas as she fights rare brain disease article 2018/08/21
Hurler Syndrome: World record attempt aims to help local boy battle rare disease article 2018/08/21
Familial Chylomicronemia Syndrome: Ultra-rare disease patients find support in connectedness article 2018/08/21
L1 Cam Syndrome: $1K Needed To Help Dublin Boy With Rare Disease In Need Of Bike article 2018/08/20
Frontotemporal Dementia: St. George support group focuses on rare disease that causes loss of speech article 2018/08/19
Niemann-Pick Disease: Reno twins with rare, fatal disease will be on CNN show "Something's Killing Me" article 2018/08/17
Aplastic Anemia: Boise teen with rare disease finds one in a million match for life-saving transplant article 2018/08/17
Epidermodysplasia Verruciformis: New Link Found Between A Rare Skin Disease and Beta-HPV article 2018/08/16
California group helps people with rare diseases aim for new heights article 2018/08/16
Leigh Syndrome: A McKinney family and UT Southwestern scientists race to save boy with ultra-rare disease article 2018/08/15
Fabry Disease: FDA Approves Galafold for Rare Genetic Disorder, Fabry Disease article 2018/08/14
Kawasaki Disease: Rare disease leaves Cambridgeshire toddler unable to walk and talk article 2018/08/14
Hunter Syndrome: Talking about rare disease article 2018/08/13
hATTR: FDA approves first-of-its kind targeted RNA-based therapy to treat a rare disease article 2018/08/10
Sarcoidosis: Local nurse leads support group for rare disease article 2018/08/05
Lamellar Ichthyosis: Mum says her baby girl’s skin is like ‘petting a SNAKE’ due to rare condition that means she has to bathe in bleach article 2018/08/02
Undiagnosed: Picture of Ontario girl with rare disease wins Ontario Youth Sports photo contest article 2018/08/02
Alkaptonuria: New treatment for ultra-rare disease, alkaptonuria article 2018/08/01
Hermansky-Pudlak Syndrome: MN man battles rare genetic disorder article 2018/07/31
Familial Amyloid Polyneuropathy: What caused this man's scalloped pupil? article 2018/07/31
Stiff Skin Syndrome: 'I email 100 doctors a day': Mother of boy, 12, with rare terminal disease that is turning him 'to STONE' describes her desperate attempts to find a cure article 2018/07/30
PODCAST: Rare Unplugged: Episode 1 podcast 2018/07/30
Alternating Hemiplegia of Childhood: DC Lemonade Stand Raises More Than $1K for Toddler With Rare Disease - NBC Washington article 2018/07/29
Erythropoietic Protoporphyria: Genetic condition makes toddler allergic to sun article 2018/07/29
FDA Announces New Framework for Gene Therapies to Treat Rare Diseases - AJMC article 2018/07/29
AI Company Raises €8.6M to Find Drugs for Rare Diseases Faster and Cheaper Than Ever - LABIOTECH.eu article 2018/07/26
Adult Polyglucosan Body Disease: Film series pick highlights rare disease - Jewish Exponent article 2018/07/25
Degenerative Leiomyopathy: Marshall family hopeful they'll find cure for daughter's rare disease - WWMT West Michigan article 2018/07/24
North Carolina to require more screening for rare diseases in newborns - WSOC Charlotte article 2018/07/24
Angelman Syndrome: Angelman Syndrome: The rare condition stopping kids from walking and talking - nine.com Australia article 2018/07/21
Duchenne Muscular Dystrophy: Consortium.AI wants to cure rare diseases using artificial intelligence - VentureBeat article 2018/07/19
Congenital Thrombotic Thrombocytopenic Purpura: SU football's Sam Heckel fights a rare disease; Boeheim's army is back - Syracuse.com podcast 2018/07/19
Stiff Skin Syndrome: 12-year-old's rare disease is turning him to stone - People article 2018/07/18
MPS 7: Baby battling rare disease arrives home after receiving potentially lifesaving treatment - WSOCTV Charlotte article 2018/07/18
Hunter Syndrome: Bozeman boy’s family looks into gene therapy to cure rare disease - NBC Montana article 2018/07/17
CADASIL: Family fighting against rare disease through annual fundraiser - KWWL Waterloo article 2018/07/16
Glycogen Storage Disease: Cleveland teen helps to research her own disease - WKYC Cleveland article 2018/07/12
CD40 Ligand: "Baby" King is not a baby anymore: Syracuse boy with rare disease ha outlived the odds - Syracuse.com article 2018/07/12
Waardenburg Syndrome: If One Eye’s Brown and One Eye’s Blue, This Day is for You - KWTX Waco article 2018/07/12
Schimke Immuno-Osseous Dysplasia: Alabama boy with rare disease will get "superpowers" during upcoming surgery - AL.com article 2018/07/10
Huntington's Disease: New Therapies on the Horizon for Huntington's Disease - Rare Disease Report article 2018/07/10
Hemoglobin Nottingham: One of a Kind Kid - WPSD Paducah article 2018/07/09
Huntington’s Disease: How Brain Training Games Could Help - The Conversation article 2018/07/09
Multiple Sufatase Deficiency: Neenah Man to Walk 170 Miles in Ireland to Fight Rare Genetic Disease - We Are Green Bay article 2018/07/09
Centronuclear Myopathy: Dynacure secures $55 million Series A round for rare genetic disease treatment - MedCity News article 2018/07/06
Pantothenate Kinase-Associated Neurodegeneration: Community rallies to help child with rare disease - 9News Denver article 2018/07/05
WEBPAGE: Understanding ZSD webpage 2018/07/03
Phenylketoneuria: Indianapolis student awarded scholarship for accomplishments while living with rare genetic disease - WTHR Indianapolis article 2018/07/02
Hurler Syndrome: Churchland Sisters Have Broken Many Bones, But They Are By No Means Broken - The Virginian-Pilot article 2018/06/17
Sanfilippo Syndrome: Local family raises thousands for children with rare disease - WACH Columbia article 2018/06/17
Dysautonomia: Rare disorder can't keep indomitable Makenzie down for long - HometownLife.com article 2018/06/07
Carcot-Marie-Tooth Disease: Genetic "surgery" for rare diseases using Crispr - The Mercury News article 2018/06/07
Five Things I've Learned About Living With a Rare Disease - GlobalGenes.org article 2018/03/07
PODCAST: Rare In Common: Hanging Out With Zebras: Life with a genetic mutation so rare it has never been reported before - RareInCommon.com podcast 2018/02/28
VIDEO: Rare In Common video 2017/02/27
Banking for the Future: How Biobanking Helps the Rare Disease Community (Part 2 of 2) - GlobalGenes article 2016/07/07
Banking for the Future: How Biobanking Helps the Rare Disease Community - GlobalGenes article 2016/06/27
VIDEO: Super Power Baby Project - TEDxAuckland video 2014/10/09
September, 2009 | Patient Voices: Rare Diseases - The New York Times article 2009/09/01