Petition Closed

Please sign our newly launched petition calling on NORD to include Pigmented Villonodular Synovitis (PVNS) in their directory of rare diseases.

PVNS is a joint problem that usually affects the hip or knee. It can also occur in the shoulder, ankle, elbow, hand or foot. When you have PVNS, the lining of a joint becomes swollen and grows. This growth harms the bone around the joint. The lining also makes extra fluid that can cause swelling and make movement very painful. It’s pretty rare, tends to affect more men than women, and seems to occur in 30s and 40s. No one really knows what causes it although it might be trauma, it can take ages to diagnose, and there is no one definitive cure, as the disease seems to reoccur in approximately half of the cases. Treatment appears to be a combination of key-hole surgery to remove the tumors (symptoms) then open knee surgery to remove the synovium lining (the cause) and if that doesn't work radiation. Or that could just be my pattern, many might have different experiences?

Currently, PVNS is not mentioned or listed AT ALL in the NORD directory. It’s bad enough this is already a rare disease, but to not even to be acknowledged as such by NORD means lack of patient education, funding, resources, and research. Signing this petition you are not only helping patients struggling with the unknowns of PVNS, but also the friends and family of those patients.

Thanks for your support!

Letter to
NORD — National Organization for Rare Disorders
I just signed the following petition addressed to: NORD — National Organization for Rare Disorders.

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Include PVNS in their directory of rare diseases

Please sign our newly launched petition calling on NORD to include Pigmented Villonodular Synovitis (PVNS) in their directory of rare diseases.

PVNS is a joint problem that usually affects the hip or knee. It can also occur in the shoulder, ankle, elbow, hand or foot. When you have PVNS, the lining of a joint becomes swollen and grows. This growth harms the bone around the joint. The lining also makes extra fluid that can cause swelling and make movement very painful. It’s pretty rare, tends to affect more men than women, and seems to occur in 30s and 40s. No one really knows what causes it although it might be trauma, it can take ages to diagnose, and there is no one definitive cure, as the disease seems to reoccur in approximately half of the cases. Treatment appears to be a combination of key-hole surgery to remove the tumors (symptoms) then open knee surgery to remove the synovium lining (the cause) and if that doesn't work radiation. Or that could just be my pattern, many might have different experiences?

Currently, PVNS is not mentioned or listed AT ALL in the NORD directory. It’s bad enough this is already a rare disease, but to not even to be acknowledged as such by NORD means lack of patient education, funding, resources, and research. Signing this petition you are not only helping patients struggling with the unknowns of PVNS, but also the friends and family of those patients.

Thanks for your support!

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Sincerely,