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Archives for: August 24th, 2015

Autoinflammatory Alliance

Written by Lisa Sencen on August 24, 2015

The Autoinflammatory Alliance is a non-profit, voluntary organization dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. The Autoinflammatory Alliance is celebrating its first ever awareness month! Raise more awareness by using the hashtaghs #autoinflammatoryaugust for the rest of this month!

1.) What does it mean… Read More

Member Spotlight: FIRST

Written by Lisa Sencen on August 17, 2015

The Foundation for Ichthyosis & Related Skin Types (FIRST) is a voluntary organization dedicated to helping individuals and families affected by the inherited skin diseases collectively called the ichthyoses. The ichthyoses are a group of rare, inherited disorders characterized by abnormally dry, scaly, thickened skin due to abnormalities in the… Read More

Member Spotlight: Cure SMA

Written by Lisa Sencen on August 10, 2015

Cure SMA is a voluntary-driven, non-profit organization dedicated solely to eradicating SMA by promoting and supporting research, helping families cope through informational programs and support, and educating the public and the medical community about SMA.

1.) What does it mean to you personally to be a patient organization serving the rare… Read More

Member Spotlight: CLOVES Syndrome Community

Written by Lisa Sencen on August 3, 2015

The mission of CLOVES Syndrome Community (CSC) is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. Its vision is to have an improved quality of life for people with CLOVES syndrome.

1.) What does it mean to you personally to be a patient organization serving… Read More

Member Spotlight: LGDA

Written by Lisa Sencen on July 27, 2015

The mission of the LGD Alliance is to improve the care of patients with lymphangiomatosis and Gorham’s disease by promoting research that will identify effective treatments and ultimately a cure for these diseases. The Lymphangiomatosis & Gorham’s Disease (LGD) Alliance is a non-profit foundation dedicated to patient support, advocacy, and the… Read More