Nā Mustrular dystrophies - Nā wahi hoihoi a me ka manaʻo o kā mākou kauka

E aʻo hou e pili ana muscular dystrophiess, Hāʻawi ʻo Passeportsanté.net i kahi koho o nā hui a me nā kahua aupuni. Hiki iā ʻoe ke loaʻa ma laila Additional Information a kāhea aku i nā kaiāulu a i ʻole nā hui kākoʻo e ʻae iā ʻoe e aʻo hou aʻe e pili ana i ka maʻi.

palena'āina

Palani

ʻAhahui Farani e kūʻē i ka Myopathies (AFM)

ʻO ka hui i hana ʻia ma 1958 e nā maʻi a me nā ʻohana o nā maʻi, me ka manaʻo e hoʻōla i nā maʻi neuromuscular a hōʻemi i ka hemahema o ka poʻe i hoʻopilikia ʻia.

www.afm-telethon.fr

MAKEMAKE

ʻO ka puka maʻi laʻa

www.keiki makua ole.Fr /

 

Kanaka

Muscular Dystrophy Canada

ʻO ka hui nona ka pahuhopu e holomua i ka noiʻi ʻana i nā maʻi neuromuscular a kākoʻo i nā maʻi a me ko lākou ʻohana.

www.muscle.ca

ʻAmelika Hui Pū ʻIa

ʻAhahui Muscular Dystrophy

www.mdausa.org

 

Ka manaʻo o ke kauka

Ma ke ʻano he ʻano kūpono, hoʻokipa aku ʻo Passeportsanté.net iā ʻoe e ʻike i ka manaʻo o kahi ʻoihana olakino. Hāʻawi ʻo Dr Jacques Allard iā ʻoe i kona manaʻo ma ka dystrophy muscular :

ʻO kaʻu ʻōlelo aʻo i manaʻo nui ʻia no nā mākua e hopohopo nei i ka ulu ʻana o kā lākou keiki. Inā pilikia kāu keiki i ka hele wāwae, ka holo ʻana, ka haʻalele ʻana i ka lepo a i ʻole ka piʻi ʻana i ke alapiʻi, me he mea lā he ʻino a hāʻule pinepine paha, ʻoi aku ka maikaʻi e ʻike i ke kauka, no ka mea ʻo ia nā hōʻailona mua o ka muscular dystrophy. . I ka wā e ʻike ʻia ai, hiki i ka lāʻau lapaʻau a me ka hoʻoponopono hou ke kōkua i ka hoʻomaha ʻana i nā hōʻailona a me ka hoʻolohi i ka piʻi ʻana o ka maʻi. ʻO ka hope, paipai pū wau e nīnau i ke kauka akamai i ka genetics.

Dr ʻO Jacques Allard MD FCMFC

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