Los 10 principales competidores de debra.ie

ebresearch.org

For the Deshe Family, the mission is clear, “We would love to see this disease gone, and we want to be a part of helping eradicate it—forever.” Ari Deshe, the founder and chairman of Safe Auto...

pieldemariposa.es

https://youtu.be/gbzegn9_KWchttps://youtube.com/shorts/fLcWWkiKHj4 Firma La Piel de Mariposa es una enfermedad RARA GENÉTICA INCURABLE DOLOROSA Imagina tener miedo de hacer daño a tu bebé con un simple abrazo. Imagina que su piel fuera tan frágil como las alas de una mariposa, y que acciones tan cotidianas como comer o caminar le causaran heridas. Imagina que en el […]

agrenska.se

Bli medlem i Ågrenskas vänskapsförening och stöd barn, familjer och aktiviteter för personer med funktionsnedsättningar och sällsynta hälsotillstånd. Medlemskap för privatpersoner, familjer och företag.

mun-h-center.se

I tandvården möter vi personer med bekräftat eller misstänkt sällsynt hälsotillstånd. Här hittar du utbildningsmaterial och stöd för dig som behandlare.

paediatrieschweiz.ch

Als offizieller Partner der FMH ist pädiatrie schweiz die kompetente Auskunftsstelle der Kinder- und Jugendmedizin in der Schweiz. Zu allen wichtigen pädiatrischen Themen stehen Spezialistinnen und Spezialisten zur Verfügung.

fdmasalliance.org

FD/MAS Alliance is working to raise awareness for fibrous dysplasia, McCune-Albright syndrome. As part of that effort, we are holding a State Proclamation campaign to get as many states as possible to recognize FD/MAS Global Awareness Week 2026.

curegsd.org

the children's fund for glycogen storage disease research is a 501(c)3 not-for-profit foundation that aims to make a difference in the lives of children and families living with gsd1.

sicklecelldisease.org

CONGRESS PASSES FISCAL YEAR 2026 FUNDING PACKAGE WITH BIG WINS FOR THE SICKLE CELL DISEASE COMMUNITY In early February, Congress finally advanced, and the President signed into law, a funding package for federal programs for fiscal year (FY) 2026, which runs through September 30, 2026. All three federal sickle cell disease programs — Health Resources and Services Administration’s (HRSA’s) Sickle Cell Disease Treatment Demonstration Program, HRSA’s Sickle Cell Disease Newborn Screening Follow Up Program and the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection Program — were maintained with the same funding levels as FY25.

geneticalliance.org.uk

SWAN UK is the only dedicated support community in the UK for families affected by undiagnosed genetic conditions.