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Nutrition Equity Episode 7: Cobalamin Disorders

August 16, 2023 Joanna Season 1 Episode 7
Nutrition Equity Episode 7: Cobalamin Disorders
Rare Connection
Chapters
0:00
Britnay's key goal's of the steering committee with HCU Network America
6:17
motivation for joining the steering committee for cobalamin disorders
8:22
nutritional needs
12:50
difference between hydroxy cobalamin and over the counter b-12
13:54
cystadane oral powder medication) is needed in higher amounts
16:08
Newborn screening
17:51
Britnay's key goal's of the steering committee with HCU Network America
18:16
How the medical nutrition equity act can change those with cobalamin disorders
20:58
obstacles when striving for adequate nutrition
26:54
colorado has ta compunding pharmacy for hydroxycobalamin but supply and demand is a problem
27:50
How the Medical Nutrition Equity Act would Cobalamin patents
28:42
Metabolic genetacist can help can help patients with cobalamin disorders find affordable hydrpxycoblamin
29:31
Healthwell Foundation used to help with costs of medication
30:32
How Grayson's death affected Britany's advocacy work
32:25
Misconceptions of Cobalamin disorders
35:00
bridging the gap and profiding support for the MNEA
37:57
How listeners can help support the MNEA
39:36
Story th describe the significance of Britany's work
42:19
A single message for Law Makers
43:15
advice for parents
45:09
final ask of listeners
46:50
fining resources
More Info
Rare Connection
Nutrition Equity Episode 7: Cobalamin Disorders
Aug 16, 2023 Season 1 Episode 7
Joanna

Send us a Text Message.

Listen as I talk with Brittany, parent of two children with Cobalamin G and the head of the Cobalamin Steering Committee for HCU Network America.  Brittany will discuss her reasons for advocacy, her role on the steering committee, and the issues faced by those with Cobalamin Disorders.

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Show Notes Chapter Markers

Send us a Text Message.

Listen as I talk with Brittany, parent of two children with Cobalamin G and the head of the Cobalamin Steering Committee for HCU Network America.  Brittany will discuss her reasons for advocacy, her role on the steering committee, and the issues faced by those with Cobalamin Disorders.

Support the Show.

0:00
Britnay's key goal's of the steering committee with HCU Network America
6:17
motivation for joining the steering committee for cobalamin disorders
8:22
nutritional needs
12:50
difference between hydroxy cobalamin and over the counter b-12
13:54
cystadane oral powder medication) is needed in higher amounts
16:08
Newborn screening
17:51
Britnay's key goal's of the steering committee with HCU Network America
18:16
How the medical nutrition equity act can change those with cobalamin disorders
20:58
obstacles when striving for adequate nutrition
26:54
colorado has ta compunding pharmacy for hydroxycobalamin but supply and demand is a problem
27:50
How the Medical Nutrition Equity Act would Cobalamin patents
28:42
Metabolic genetacist can help can help patients with cobalamin disorders find affordable hydrpxycoblamin
29:31
Healthwell Foundation used to help with costs of medication
30:32
How Grayson's death affected Britany's advocacy work
32:25
Misconceptions of Cobalamin disorders
35:00
bridging the gap and profiding support for the MNEA
37:57
How listeners can help support the MNEA
39:36
Story th describe the significance of Britany's work
42:19
A single message for Law Makers
43:15
advice for parents
45:09
final ask of listeners
46:50
fining resources