Genes

World Rare Disease Day is being held Feb. 28, 2009. Join the fight to raise awareness and educate people on genes and how they impact health! Millions of people worldwide are impacted by rare diseases of different types -- together they make rare disease not really rare.

Category:

Nonprofits & Activism

Tags:

• Down Syndrome
• Niemann Pick Type C
• Progeria
• Batten Disease
• Angelman Syndrome
• Williams Syndrome
• Parkinson's
• Alzheimer's
• DNA
• Genetic Diseases
• World Globe
• x-files song

[Amethystwave]

Great video, but an utterly bizarre song choice - the theme from X-files associated with extra terrestrial lifeforms?? what were they thinking?

[AddiCassiFund]

The song is meant to be thought provoking. Genes can do strange things to our bodies -- my kids are dying from their genetic defect. I think the X-Files episodes make people think differently and out of the box.

Also, the X-Files did a segment that covered lysosomal storage diseases (about group of 60 rare human genetic diseases)

I debated on the song and tried countless songs with the topic and this song seemed to work best. If you have a better idea, send me the song and I'll try it! :)

[HDPatientOutreach]

Thank you for a great and informative video! Thousands of children around the world are also affected from Juvenile Huntington's Disease too. I lost my only chld, Kelly to JHD. The world needs to be educated on all of the rare diseases!

Jean Miller

[AddiCassiFund]

Jean - Can we connect to talk about The Project Charity -- The Children's Rare Disease Network? I need to et people involved in the Juvenile Huntington's Disease community involved with us!

[bernie2563]

Incredible video. Chris and Hugh are not only leading the fight for their own daughters, but for humanity. We should all take their lead and make time to join in on the fight. Thank you and blessings to Chris and Hugh!

[AddiCassiFund]

Thanks for your support. We keep trying to get the word out that rare disease is not so rare.

[gadionson1]

^_^

[BirdMoments]

GENES:

/watch?v=_zzCjnvEtgo

[winterstellar]

Yes, America is just as stricken by genetic disorders as everybody else, still millions of ignorant people there fantasize about a "intelligent designer" and even fight important science like stem-cell research or embryonic research... : (

[poeticpaul]

Dear mom on a mission.

You remind me to cry each and every day. Untill there is a cure for your wonderful children. and all the other wonderful sick children across the World.

May God bless you all.

Angel of Hope

[AngelaPalotes]

My daughter suffered Metachromatic Leukodystrophy . She died at age 12, last October. I think the discussion about music, video and technical details is the least we should us to be occupying. I love the video and we should all be united to spread this truth. As a mother who has lost his sick daughter, what matters most to me is that increasingly disseminated the tragedies of living with a rare disease, and to do something soon to get the cure

[tonyhoffmans]

well all this diseases are not really rare they have been with us for ages, but i guess you already knew that. but looking at it from another perspective its just how nature works and understanding more about this genetic mutations might someday help us understand them enough to reverse them. i liked your video but you misleadingly make seeem Genes like if all where bad.

[instruc231]

See how weak the humans are ....Both of my children having batten ncl2 ...ther is NO one in earth can take you out of it ...except ONE GOD...........Believe and faith is the only way out...so people you have to submit your self to him what ever is your problem .. Financial .Emotional... medical any think you want ...the only one GOD well be your right answer .