rare disease treatments

R.A.R.E. Project's, Jonathan Jacoby to present at FDA Hearing on Rare Disease

By nboice on June 29, 2010

On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public hearing and Webcast on the Development of Articles for Rare Diseases. This public hearing is intended to gain from health care providers, academia, industry, patients, and other interested persons their perspectives on various aspects [...]

Posted in Advocacy/Policy, Bench to Bedside, News | Tagged Charity, Children, Children with Rare Disease, children's rare diseases, childrens rare disease network, Collaboration, communication, FDA, Francis Collins, genetic conditions, Genetics, Health Reform, joubert syndrome, kids, National Institutes of Health, Niemann Pick Type C, NIH, NORD, orphan disease, Orphan Drug Act, orphan drugs, public awareness, rare disease and children, Rare Disease Registry, rare disease treatments, rare disorder | Leave a response

Blog for Rare! Bloggers from around the world come together for rare disease awareness and support for World Rare Disease Day 2010 (Feb. 28). #blog4rare

By Catherine Calhoun on February 21, 2010

Welcome to the first official “Blog for Rare.” We’re bringing people from across the world together this week in celebration of World Rare Disease Day 2010 (February 28). This SNiPs post is a mix of web links to specific blog posts and to bloggers who have a connection to rare disease (a blog roll [...]

Posted in Featured, Global Community | Tagged #blog4rare, #raredisease, Blog Action Day, Blog Action Day for Rare Disease, Blog for Rare, Blog for Rare 2010, Children, Children with Rare Disease, childrens rare disease network, Collaboration, communication, connecting children and families with rare disease, Genetics, Genzyme, Global Effort, Global Effort for Rare Disease, Global Genes Project, joubert syndrome, kids, National Institutes of Health, NIH, NORD, pediatric rare disease, public awareness, Rare Disease, Rare Disease Awareness, Rare Disease Research, Rare Disease Support, rare disease treatments, rare disorders, SNiPs, Together for Rare Disease, Together for Rare Diseases, Undiagnosed, World Rare Disease Day | 2 Responses

Make Rare Disease a Top USA Health Care Priority, Vote Today at Change.org – 25 Million+, It is time to care about rare disease.

By Catherine Calhoun on February 1, 2010

For the millions and millions of kids and adults, brothers and sisters, moms and dads, families of every sort, friends, doctors, researchers, non-profits, foundations, research institutions, hospitals and advocacy groups, for everyone touched by rare disease, put on your blue jeans, put on your blue jeans denim ribbon, and vote for rare disease at Change.org [...]

Posted in Featured, News | Tagged Collaboration, National Institutes of Health, NIH, NIH Office of Rare Diseases Research, orphan disease, orphan drugs, pediatric rare disease, Rare Disease, rare disease and children, Rare Disease Registry, Rare Disease Research, rare disease treatments, Rare Diseases Registry, Rare Diseases Research, rare disorder, rare disorders, Together for Rare Disease, Together for Rare Diseases, Vote for Rare Disease, Vote for Rare Diseases | Leave a response

Nominate Your Rock Star of Science!

By nboice on September 3, 2009

Geoffrey Beene Gives Back®’s hip new campaign, “Rock Stars of Science” (a.k.a Rock S.O.S) is making its mark, and The Children’s Rare Disease Network is proud to be affiliated with this important initiative! Geoffrey Beene Gives Back® teamed up with GQ Magazine to create a philanthropic campaign pairing A-list rock stars and celebrities with the [...]

Posted in Bench to Bedside, Featured | Tagged Capital Hill, Charity, Children, Children with Rare Disease, children's rare diseases, childrens rare disease network, Collaboration, communication, CONGRESS, disease, Eric Topol, FDA, Francis Collins, genetic conditions, Genetics, Geoffrey Beene, Geoffrey Beene foundation, GQ Magazine, House of Representatives, information, kids, National Institutes of Health, NIH, Non-Profit, orphan drugs, pediatric rare disease, public awareness, Rare disease facts, rare disease treatments, Rock Stars of Science, scientific research, Seal, Senate, The Project Charity -- The Children's Rare Disease Network | Leave a response

New Approaches To Treatment Needed In Pediatric Cancer – Patient Podcast Series #3

By nboice on July 27, 2009

In this third in a series of podcasts focused on rare disease patient advocates jointly produced by The Burrill Report, the California Healthcare Institute, and the Children’s Rare Disease Network, we speak to Susan Cornelius, business advisor to The Nicholas Conor Institute for Pediatric Cancer Research. When her granddaughter struggled against cancer, she was frustrated [...]

Posted in Bench to Bedside, Featured | Tagged Beth Ann Baber, Burrill Report, California HealthCare Institute, cancer, cancer in children, CHI, childrens rare disease network, Nicholas Conor Institute, pediatric cancer, Rare Disease, rare disease advocacy, rare disease treatments, Susan Cornelius | Leave a response

Connecting Children and Families Suffering From Rare Disease

By kcovey on March 21, 2009

When a child is diagnosed with a rare disease, the child and their family members may have a variety of feelings as a result of the diagnosis. Sometimes it is difficult to share these feelings with others who are not directly affected by the disease. Family members may want to keep their feelings private [...]

Posted in Global Community | Tagged connecting children and families with rare disease, rare disease community, rare disease diagnosis, rare disease treatments, The Project - Children's Rare Disease Network | Leave a response

rare disease treatments

R.A.R.E. Project's, Jonathan Jacoby to present at FDA Hearing on Rare Disease

Blog for Rare! Bloggers from around the world come together for rare disease awareness and support for World Rare Disease Day 2010 (Feb. 28). #blog4rare

Make Rare Disease a Top USA Health Care Priority, Vote Today at Change.org – 25 Million+, It is time to care about rare disease.

Nominate Your Rock Star of Science!

New Approaches To Treatment Needed In Pediatric Cancer – Patient Podcast Series #3

Connecting Children and Families Suffering From Rare Disease

THE DISEASE MAY BE RARE, BUT HOPE SHOULD NOT BE

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